Pediatric Palliative Care: Global Perspectives

Caprice Knapp · Vanessa Madden · Susan Fowler-Kerry Editors

Foreword by Dr. Kathleen M. Foley

123 Editors Dr. Caprice Knapp Dr. Vanessa Madden University of Florida University of Florida Department of Health Outcomes Department of Health Outcomes and Policy and Policy SW 16th Street 1329 SW 16th Street 1329 32610 Gainesville Florida 32610 Gainesville Florida Institute for Child Health Policy Institute for Child Health Policy USA USA [email protected]ﬂ.edu [email protected]ﬂ.edu

Dr. Susan Fowler-Kerry University of Saskatchewan College of Nursing College Drive 1121 S7N 0W3 Saskatoon Saskatchewan 306 St Andrew’s College Canada [email protected]

ISBN 978-94-007-2569-0 e-ISBN 978-94-007-2570-6 DOI 10.1007/978-94-007-2570-6 Springer Dordrecht Heidelberg London New York

Library of Congress Control Number: 2011942747

© Springer Science+Business Media B.V. 2012 No part of this work may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, microﬁlming, recording or otherwise, without written permission from the Publisher, with the exception of any material supplied speciﬁcally for the purpose of being entered and executed on a computer system, for exclusive use by the purchaser of the work.

Printed on acid-free paper

Springer is part of Springer Science+Business Media (www.springer.com) Foreword

Much progress has occurred in the development of pediatric palliative care globally over the last 15 years. Yet, much more needs to be done to address the growing number of children who could benefit from such care. Estimates of the need for palliative care for children globally vary, but upwards of seven million children are in need of palliative care services today. There is now wide acceptance that palliative care is a serious public health issue with increasing attention by governments to integrate palliative care into their national health strategies to address the growing numbers of adults and children who require such care. Palliative care is also now recognized as a human rights issue and patients and families have a “right to health,” or a right to receive such care. Various human rights declarations refer to this right to palliative care and a governments’ obligation to provide such services and essential medicines. The World Health Organization (WHO), when it published its monograph on Cancer Pain Relief and Palliative Care for Children in 1996, intentionally set forth a definition for pediatric palliative care that attempted to be both comprehensive and inclusive to address the needs of children with life-limiting illnesses. The WHO defined pediatric palliative care as the active total care of the child’s body, mind and spirit. Health care providers must evaluate and alleviate a child’s physical, psychological and social distress. The definition emphasizes that palliative care begins at the time of diagnosis and continues regardless of whether or not a child receives disease directed treatment. Such care encompasses a broad, multidisciplinary approach that includes both the family and the community and is provided in a range of settings from hospital, to clinic, to home and implemented even if resources are limited. This unique and timely book captures the progress and vision of many dedicated groups around the world who have worked to advocate for and develop palliative care services for children. Each of the book chapters describes the efforts and the challenges leaders in countries are experiencing as they address the palliative care needs of children with life-limiting illnesses. Each country specific chapter details the current state of pediatric care services and demonstrates how early initiatives in palliative care and varied approaches have led to the development of a range of

v vi Foreword services from pediatric hospices to hospital-based palliative care units and teams to community and home-based care services, all adapted to the needs and resources of each country. Such programs range from sophisticated academic clinical and research and educational programs to more community and home-based models of care; they also vary in their educational, service and research roles and in the size and capacity of the services they deliver. The services provided vary depending on the disease entities of the children and the setting in which care is delivered (e.g., cancer, HIV/AIDS, neurodegenerative diseases etc.) but all describe an impressive degree of professionalism with integration of clear standards to provide basic palliative care. Yet, all encompass in their everyday activities, the WHO definition and philosophy of pediatric palliative care with a focus on the quality of living of the patient and family as the unit of care. As each country describes its challenges and barriers to become fully integration and receive acceptance of pediatric palliative care, common barriers emerge that seem universal. These include: the lack of health care professional knowledge, education and training in palliative care; the lack of essential medicines for pain and symptom management; the lack of communication among healthcare professionals and patients and families; the lack of resources, both financial and social, to support such care; the lack of priority given to palliative care by the common disease entities afflicting children, e.g., cancer and HIV/AIDS; and finally, the lack of research to guide evidenced-based approaches to care. This compendium of information on pediatric palliative care services globally serves as a rich resource of information on the developmental efforts to advance pediatric services. All three editors are internationally recognized as leaders in pediatric palliative care and they themselves have contributed significantly to the field’s growth and development. They bring their own advocacy and support to the field building of palliative care for children through the organization of the content of the text and the broad array of countries represented. In particular, they have provided a framework for capturing the growth of the field of pediatric palliative care that respects and represents the critical importance of context and setting, culture and resources. This book is a major contribution to the process of documenting the development of pediatric palliative care and a tribute to those individuals and teams with the vision and commitment to advance pediatric palliative care. Children worldwide deserve nothing less. Dr. Kathleen M. Foley Acknowledgements

The idea for this book was born at an altitude of 30,000 feet. In 2005 I accepted a position at the University of Florida in the College of Medicine. My first assignment was to conduct research and evaluation of a new integrated pediatric palliative care program in Florida. I had no idea what that meant and as I began to browse the literature, I was surprised how little information existed. Specifically, I had a difficult time finding about how these programs were developed, implemented, and operated. After a few months of searching I decided to head to London which seemed to be the birthplace of palliative care. My 9-month old daughter, my mother, and a co-worker and friend Pam Simmons joined me on this trip. We had a great time visiting children’s hospices in England and Scotland and I learned a lot about how care was delivered, to whom, and the barriers that the hospices faced. Sitting on the air- plane on the way home however, it struck me how lucky I was to have the resources to make that trip and how it was unfortunate that if I was unable to find this information neither would others. Since that time, I have learned so much about pediatric palliative care from my experiences with Florida’s Partners in Care: Together for Kids program and reading everything I could get my hands on. Betsy Shenkman, Phyllis Sloyer, and Charlotte Curtis provided excellent guidance and mentorship. As a result, our team was able to publish many peer-reviewed papers and make valuable contacts in the pediatric palliative care community. Yet, I just could not get rid of that nagging feeling that the experiences and stories of many in the pediatric palliative care community were untold. I am thankful that Springer gave us the opportunity in 2010 to tell those stories. Of course, we would have no book without the exceptional contributions of each and every author. Thank you all. The countless families and children who have been the inspiration for, and the recipients of, pediatric palliative care programs around the world are the reason that this book exists. Behold, children are a heritage from the Lord- Psalm 127:3. Special thanks to Vanessa Madden and Susan Fowler-Kerry who agreed to go on this journey with me despite being incredibly busy in their own lives; I am blessed by their help and friendship. Lindsey Woodworth deserves many thanks for organizing this project and her superb attention to detail. My family has been my greatest inspiration and support throughout this process. My parents, Charles and Sherry

vii viii Acknowledgements

Garing, encouraged me and were always willing to help care for my daughter when I was faced with a deadline. Moorea, my beautiful daughter, turned four during the writing of this book and learned that she would be a big sister! Finally, my husband Colin provided plenty of love, support, patience, and humor. Caprice Knapp

In the fall of 2006 I had the opportunity to move to the United States to take a research position at the University of Florida. As an Australian living and working in the U.S., I was struck by how health care systems profoundly impact the way in which care is delivered at the local, state, and national levels. It is with this in mind that I would like to thank all the contributing authors for giving us a global perspective of pediatric palliative care. In each country pediatric palliative care is marching forwards, sometimes in situations where resources are scarce and the challenges immense, because of the commitment of health care providers, hospices, hospitals, advocates, policy makers, and researchers alike. We hope that this book is a useful resource for people who wish to further develop and promote pediatric palliative care in their own countries. The authors have provided valuable information on how pediatric palliative care operates under funding and resource constraints and the excellent local initiatives that are emerging and thriving. I would also like to thank everyone involved with Florida’s Partners in Care: Together for Kids program (PIC:TFK). This demonstration program is one of the ﬁrst programs nationally to allow publicly-insured children to receive palliative care alongside curative or life-prolonging therapies. For all that I have learnt and continue to learn from PIC:TFK, I would like to thank Children’s Medical Services Network, the Agency for Health Care Administration, the hospices, and most importantly the families. The wellbeing of children and their families is at the heart of pediatric palliative care, and I am constantly humbled by the courage and strength of the children and their families and the dedication of those who care for them. On a personal note I would like to thank Dr. Knapp, Dr. Fowler-Kerry, Dr. Sloyer, Dr. Shenkman, and Charlotte Curtis for their contributions to my research career; and Lindsey Woodworth and Deborah Rapalo for their invaluable assistance. Vanessa Madden

Conventional terms of acknowledgement cannot begin to reﬂect the contributions of our global authors to this book. Your commitment and passion to improve the lives of countless numbers of children world-wide with palliative care needs and their families was evident and clearly articulated through each of your chapters. A consistent theme though out was that, “you have all decided to be a rainbow in someone’s cloud”. The result is the creation of a text where we can ﬁnd new solutions together. The process of editing a book can be nothing short of a daunting task but I must confess that working with both Caprice and Vanessa has been an amazing journey. So many thanks to you both for the privilege of working with you. Acknowledgements ix

A special thanks always to my mom and dad, Art and Hazel Fowler, I am so lucky to have parents like you. Joel, my husband, you are a constant support and have cooked more than your share of dinners. To my two beautiful daughters, I love you both and I hope that I have given you the inspiration to go after your dreams and desires. Throughout the work on this book, I often thought often about how fortunate and blessed I am to have two healthy children. Susan Fowler-Kerry

Contents

Part I Overview 1 An Overview of Pediatric Palliative Care ...... 3 Caprice Knapp, Vanessa Madden, Lindsey Woodworth, and Susan Fowler-Kerry

Part II Africa 2 Pediatric Palliative Care in Malawi ...... 17 Fred Chiputula and Zoe Palmer 3 Paediatric Palliative Care in South Africa ...... 27 Joan Marston, Busi Nkosi, and Annanda Bothma 4 Paediatric Palliative Care in Uganda ...... 41 Julia Downing, Jane Nakawesi, and Rose Kiwanuka 5 Pediatric Palliative Care in Zimbabwe ...... 65 Jenny Hunt and Eunice Garanganga

Part III Asia 6 Pediatric Palliative Care in Armenia ...... 81 Colette Cunningham, Gayane Tovmasyan, and Narine Movsisyan 7 Pediatric Palliative Care in India ...... 91 Lulu Mathews and K. Suresh Kumar 8 Pediatric Palliative Care in Malaysia ...... 109 Ednin Hamzah and Geok Lan Kuan 9 Pediatric Palliative Care in the Middle East ...... 127 Michael Silbermann, Maha Arnaout, Hany Abdel Rahman Sayed, Mohamed Sedky, Mohammad El-Shami, Myriam Ben-Arush, Salma Al-Hadad, Huda Abu-Saad Huijer, Barbara Pitsillides, Nurdan Tacyildiz, Aziza Shad, Reda Rizkallah, and Shamvil Ashraf

xi xii Contents

10 Pediatric Palliative Care in Saudi Arabia ...... 161 Saleh Al-Alaiyan and Mohammad Zaﬁr Al-Shahri 11 Paediatric Palliative Care in Singapore ...... 169 Mei-Yoke Chan and Noor Aishah Abdul Rashid 12 Pediatric Palliative Care in Thailand ...... 185 Srivieng Pairojkul

Part IV Europe 13 Pediatric Palliative Care in Germany ...... 209 Christian Lofﬁng, Dina Lofﬁng, Sabine Kraft, Martina Göß, Melanie van Dijk, Tobias Schellenberg, and Hendrik Künzler 14 Pediatric Palliative Care in Ireland ...... 239 Colette Cunningham and Philip J. Larkin 15 Pediatric Palliative Care in Poland ...... 251 Marek W. Karwacki 16 Paediatric Palliative Care in the United Kingdom ...... 269 Megumi Baba and Richard Hain

Part V North America 17 Pediatric Palliative Care in Canada ...... 301 Kimberley Widger, Susan Cadell, Betty Davies, Harold Siden, and Rose Steele 18 Pediatric Palliative Care in Costa Rica ...... 323 Lisbeth Quesada-Tristán and Daniel Masís-Quesada 19 Pediatric Palliative Care in Mexico ...... 345 Regina Okhuysen-Cawley, Armando Garduño Espinosa, Sandra Paez Aguirre, Yuriko Nakashima Paniagua, Marylou Cardenas-Turanzas, María Cristina Reyes Lucas, Jorge Mauricio Cervantes Blanco, Claudia Olivares Díaz, Teresa Hernández Morales, María de los Angeles González Ronquillo, Esperanza Alatorre Martínez, and Cointa Arroyo Jiménez 20 Pediatric Palliative Care in the United States of America ...... 359 Stacy F. Orloff

Part VI Oceania 21 Paediatric Palliative Care in Australia and New Zealand ...... 379 Jenny Hynson and Ross Drake Contents xiii

Part VII South America 22 Pediatric Palliative Care in Argentina ...... 405 Rosa M. Germ, Stella Marys Binelli, and Marcela Pose 23 Pediatric Palliative Care in Brazil ...... 417 Patrícia Lago and Jefferson Piva 24 Pediatric Palliative Care in Chile ...... 431 Chery Palma Torres, Natalie Rodríguez Zamora, and Lea Derio Palacios

Part VIII Conclusion 25 Pediatric Palliative Care: A New and Emerging Paradigm ..... 449 Susan Fowler-Kerry Index ...... 453 This is Blank Page Integra xiv Contributors

Esperanza Alatorre Martínez Unidad de Cuidados Paliativos, Instituto Nacional de Pediatría, México, D.F., C.P. 04530, México, [email protected] Saleh Al-Alaiyan Department of Pediatrics, King Faisal Specialist Hospital & Research Centre, Riyadh 11211, Saudi Arabia, [email protected] Salma Al-Hadad Department of Pediatric Hemato-Oncology, Baghdad College of Medicine, Children Welfare Teaching Hospital, Medical City, Baghdad, Iraq, [email protected] Mohammad Zaﬁr Al-Shahri Palliative Care Medicine Fellowship Program, King Faisal Specialist Hospital & Research Centre, Riyadh 11211, Saudi Arabia, [email protected] Maha Arnaout Bayt Abdullah Children’s Hospice, Sulaibikhat, Kuwait, [email protected] Cointa Arroyo Jiménez Unidad de Cuidados Paliativos, Instituto Nacional de Pediatría, México, D.F., C.P. 04530, México, [email protected] Shamvil Ashraf Children Cancer Hospital, Karachi, Pakistan, [email protected] Megumi Baba Paediatric Palliative Medicine, Children’s Hospital for Wales, Cardiff and Vale University Health Board, University Hospital of Wales, Heath Park, Cardiff CF14 4XW, UK, [email protected] Myriam Ben-Arush Department of Hematology and Oncology, Meyer Children’s Hospital, Rambam Medical Center, Haifa 31096, Israel, [email protected] Stella Marys Binelli PPCU Hospital de Pediatria Dr. Víctor J. Vilela, Rosario, Santa Fe Province, Argentina, [email protected], [email protected] Annanda Bothma Hospice Palliative Care Association of South Africa, Robertson, Western Cape 6705, South Africa, [email protected]

xv xvi Contributors

Susan Cadell Manulife Centre for Healthy Living, Lyle S. Hallman Faculty of Social Work, Wilfrid Laurier University, Kitchener, ON, Canada N2H 3W8, [email protected] Marylou Cardenas-Turanzas Department of Critical Care Medicine, The University of Texas MD Anderson Cancer Center, Houston, TX 77030, USA, [email protected] Jorge Mauricio Cervantes Blanco Unidad de Cuidados Paliativos, Instituto Nacional de Pediatría, México, D.F., C.P. 04530, México, [email protected] Mei-Yoke Chan Paediatric Palliative Service, Department of Paediatric Subspecialties, KK Women’s and Children’s Hospital, Singapore, Singapore 229899, [email protected] Fred Chiputula Umodzi Children Palliative Care, Palliative Care Support Trust, Queen Elizabeth Central Hospital, Chichiri, Blantyre 3, Malawi, [email protected] Colette Cunningham Department of Epidemiology and Public Health, Brookﬁeld Health Sciences Center, University College Cork, Cork, Ireland, [email protected], [email protected] Betty Davies School of Nursing, University of Victoria, Victoria, BC, Canada V8W 2Y2, [email protected] Julia Downing International Children’s Palliative Care Network and Makerere University, Kampala, Uganda, [email protected] Ross Drake Paediatric Palliative Care & Complex Pain Services, Starship Children’s Hospital, Auckland 1010, New Zealand, [email protected] Mohammad El-Shami Department of Psychosocial Services, Children’s Cancer Hospital, Al Sayada Zeinab, Cairo 57357, Egypt, [email protected] Susan Fowler-Kerry College of Nursing, University of Saskatchewan, Saskatoon, SK, Canada S7N 0W3, [email protected] Eunice Garanganga Hospice and Palliative Care Association of Zimbabwe, Milton Park, Harare, Zimbabwe, [email protected], [email protected] Armando Garduño Espinosa Unidad de Cuidados Paliativos, Instituto Nacional de Pediatría, México, D.F., C.P. 04530, México, [email protected] Rosa M. Germ Universidad de Ciencias Empresariales y Sociales, Buenos Aires, Argentina; PPCU Hospital de Pediatria Dr. Juan P. Garrahan, Buenos Aires, Capital Federal 1245, Argentina, [email protected], [email protected] María de los Angeles González Ronquillo Unidad de Cuidados Paliativos, Instituto Nacional de Pediatría, México, D.F., C.P. 04530, México, [email protected] Contributors xvii

Martina Göß Competence Center for Resource-Orientated Age Research, Hochschule Niederrhein, Fachbereich Sozialwesen, D-41061, Mönchengladbach, Germany, [email protected] Richard Hain Paediatric Palliative Medicine, Children’s Hospital for Wales, Cardiff and Vale University Health Board/Welsh Paediatric Palliative Care Network, University Hospital of Wales, Heath Park, Cardiff CF14 4XW, UK, [email protected] Ednin Hamzah Hospis Malaysia, 56100 Kuala Lumpur, Malaysia, [email protected] Teresa Hernández Morales Unidad de Cuidados Paliativos, Instituto Nacional de Pediatría, México, D.F., C.P. 04530, México, [email protected] Huda Abu-Saad Huijer Hariri School of Nursing, American University of Beirut, Beirut, Lebanon, [email protected] Jenny Hunt Independent Palliative Care and Bereavement Consultant, Milton Park, Harare, Zimbabwe, [email protected] Jenny Hynson Victorian Paediatric Palliative Care Program, Royal Children’s Hospital Melbourne, Parkville, VIC 3052, Australia, [email protected] Marek W. Karwacki Department of Oncological Surgery for Children & Youth, Institute of Mother and Child, 01-211 Warsaw, Poland; Home Hospice Program for Children (NGO), 05- 400 Otwock, Poland, [email protected] Rose Kiwanuka Palliative Care Association of Uganda, Kampala, Uganda, [email protected] Caprice Knapp Department of Health Outcomes and Policy, Institute for Child Health Policy, University of Florida, Gainesville, FL 32610, USA, [email protected]ﬂ.edu Sabine Kraft Bundesverband Kinderhospiz e.V., D-79106 Freiburg, Germany, [email protected] Geok Lan Kuan Department of Pediatrics, Malacca Hospital, 75400 Malacca, Malaysia, [email protected] K. Suresh Kumar Institute of Palliative Medicine, Kozhikode, Kerala 673008, India, [email protected] Hendrik Künzler Kinderhospiz Regenbogenland gGmbH, D-40625, Düsseldorf, Germany, [email protected] Patrícia Lago Department of Pediatrics, Universidade Federal de Ciencias da Saude de Porto Alegre (UFCSPA), Porto Alegre, Brazil; Department of Pediatrics, Pediatric Intensive Care Unit – Hospital de Clínicas de Porto Alegre, Porto Alegre, Brazil, [email protected] xviii Contributors

Philip J. Larkin School of Nursing, Midwifery and Health Systems, Our Lady’s Hospice and Care Services, Health Sciences Centre, University College Dublin, Belfield, Dublin 4, Ireland, [email protected] Christian Loffing Competence Center for Resource-Orientated Age Research, Hochschule Niederrhein, Fachbereich Sozialwesen, D-41061 Mönchengladbach, Germany, christian.loffi[email protected] Dina Loffing INSPER – Institut für Personalpsychologie, D-45147 Essen, Germany, dina.loffi[email protected] Vanessa Madden Department of Health Outcomes and Policy, Institute for Child Health Policy, University of Florida, Gainesville, FL 32610, USA, [email protected]fl.edu Joan Marston International Children’s Palliative Care Network, Bloemfontein, Free State 9301, South Africa, [email protected] Daniel Masís-Quesada Mexico Hospital, San Jose 1000, Costa Rica, [email protected] Lulu Mathews Current affiliation: Institute of Palliative Medicine, Calicut, Kerala 673008, India; Former affiliation: Department of Pediatrics, Government Medical College, Calicut, Kerala 673008, India, [email protected] Narine Movsisyan Department of Anaesthesia of University Clinic ‘Muratsan’, The Yerevan State Medical University, Yerevan 0028, Armenia, [email protected] Yuriko Nakashima Paniagua Pediatric Palliative Care, Hospital Civil de Guadalajara Dr. Juan I Menchaca, Guadalajara, Mexico, [email protected] Jane Nakawesi Mildmay Uganda, Kampala, Uganda, [email protected] Busi Nkosi Cotlands, Soweto, Gauteng 1862, South Africa, [email protected] Regina Okhuysen-Cawley Pediatric Critical Care Medicine and Supportive Care, The University of Texas MD Anderson Cancer Center, Houston, TX 77030, USA, [email protected] Claudia Olivares Díaz Unidad de Cuidados Paliativos, Instituto Nacional de Pediatría, México, D.F., C.P. 04530, México, [email protected] Stacy F. Orloff Palliative Care and Community Programs, Suncoast Hospice, Clearwater, FL 33760, USA, [email protected] Sandra Paez Aguirre Pediatric Hematology/Oncology and Palliative Care, Hospital 20 de Noviembre, Mexico City 03100, Mexico, [email protected] Srivieng Pairojkul Department of Pediatrics, Faculty of Medicine, Khon Kran University, Muang, Khon Kaen 40002, Thailand, [email protected] Contributors xix

Lea Derio Palacios Program for Pain Relief and Palliative Care, Ministry of Health of Chile, Santiago 8320064, Chile, [email protected] Zoe Palmer Umodzi Children’s Palliative Care Service, College of Medicine, University of Malawi, Chichiri, Blantyre 3, Malawi, [email protected] Barbara Pitsillides Palliative Care Services, The Cyprus Association of Cancer Patients and Friends, 1045 Nicosia, Cyprus, [email protected] Jefferson Piva Pediatric Intensive Care Unit, Department of Pediatrics, Hospital Sao Lucas, PUCRS University, Porto Alegre, Brazil; Emergency Department, Hospital de Clinicas de Porto Alegre, University Federal do Rio Grande do Sul (UFRGS), Porto Alegre, Brazil, [email protected] Marcela Pose Maternity and Infancy Department, PPCU Hospital Provincial de Neuquén 8300, Neuquen, Province of Neuquen, [email protected] Lisbeth Quesada-Tristán Pediatric Palliative Care and Pain Control Clinic, Children’s National Hospital, San Josè, Costa Rica, [email protected] Hany Abdel Rahman Sayed National Cancer Institute, Cairo University, Fom El-Khalig, Cairo 11796, Egypt, [email protected] Noor Aishah Abdul Rashid Paediatric Palliative Service, Department of Paediatric Subspecialties, KK Women’s and Children’s Hospital, Singapore 229899, Singapore, [email protected] María Cristina Reyes Lucas Unidad de Cuidados Paliativos, Instituto Nacional de Pediatría, México, D.F., C.P. 04530, México, [email protected] Reda Rizkallah Department of Palliative Care, Children’s Cancer Hospital, Cairo 57357, Egypt, [email protected] Tobias Schellenberg Björn Schulz Stiftung, Björn Schulz Stiftung, D-13156 Berlin, Germany, [email protected] Mohamed Sedky Department of Pediatrics, National Research Institute, Children’s Cancer Hospital, Cairo 57357, Egypt, [email protected] Aziza Shad Division of Pediatric Hematology/Oncology, Blood and Marrow Transplantation; Leukemia Lymphoma Program; Cancer Survivorship Program, Lombardi Cancer Center, Georgetown University Hospital, Washington, DC 20007-2197, USA, [email protected] Harold Siden Department of Pediatrics, University of British Columbia, Canuck Place Children’s Hospice, Vancouver, BC, Canada V6H 3V4, [email protected] Michael Silbermann Technion-Israel Institute of Technology, Haifa 31074, Israel; Middle East Cancer Consortium, Haifa 31074, Israel, [email protected] xx Contributors

Rose Steele School of Nursing, York University, Toronto, ON, Canada M3J 1P3, [email protected] Nurdan Tacyildiz School of Medicine, Ankara University, Ankara, Turkey, [email protected] Chery Palma Torres Hospital de Niños Roberto del Río, Independencia, Santiago 8320064, Chile, [email protected] Gayane Tovmasyan Global Fund for AIDS, Tuberculosis and Malaria Implementation Unit, Mission East, Yerevan, Armenia, [email protected], [email protected] Melanie van Dijk Kinderhospiz Regenbogenland gGmbH, D-40625 Düsseldorf, Germany, [email protected] Kimberley Widger Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, Toronto, ON, Canada M5T 1P8, [email protected] Lindsey Woodworth Department of Health Outcomes and Policy, Institute for Child Health Policy, University of Florida, Gainesville, FL 32610, USA, [email protected]ﬂ.edu Natalie Rodríguez Zamora School of Medicine, Hospital de Niños Roberto del Río, University of Chile, Independencia, Santiago 8320064, Chile, [email protected] Abbreviations

AAP American Academy of Pediatrics ACH Association for Children’s Hospices ACT Association for Children with Life-Threatening or Terminal Conditions and Their Families AIC Agency for Integrated Care AIDS Acquired Immune Deﬁciency Disease Syndrome ALCP Latin-American Association of Palliative Care APC&PCA Armenian Pain Control and Palliative Care Association APCA African Palliative Care Association APPM Association for Paediatric Palliative Medicine ARI Acute Respiratory Infection ART Anti-retroviral Therapy BCH Belarusian Children’s Hospice BiPAP Bilevel Positive Airway Pressure BSc Bachelor of Science BSPPM British Society for Paediatric Palliative Medicine CAM Complimentary Alternative Medicine CAMHS Child and Adolescent Mental Health Service CANICA Centro de Atencion al Nino con Cancer CCCL Children’s Cancer Center of Lebanon CCF Children’s Cancer Foundation CCH Children’s Cancer Hospital CCHE Children’s Cancer Hospital Egypt CCN Community Children’s Nurse CCOPMM Consultative Council on Obstetric and Paediatric Mortality and Morbidity CENDEISS Teaching and Research Center of the Costa Rican Social Security CHD Congenital Heart Disease CHI Children’s Hospice International ChiPPS Children’s Project on Palliative/Hospice Services CHOC Childhood Cancer Foundation CHPCA Canadian Hospice Palliative Care Association

xxi xxii Abbreviations

CIHR Canadian Institutes for Health Research CKD Chronic Kidney Disease CNPCC Canadian Network of Palliative Care for Children CNPH Canadian Network of Pediatric Hospices CPAP Continuous Positive Airway Pressure CPIP Clinical Practice Improvement Project CPL Centre of Palliative Learning CSAC College Specialist Advisory Committee CUBE Caring, Understanding, Believing, Empowering DCPC Daniel’s Care Palliative Care DDHS District Director of Health Services DHB District Health Board DME Durable Medical Equipment DNRO Do Not Resuscitate Order DPOWMF Diana Princess of Wales Memorial Fund DRI Drug Relief International EAPC European Association of Palliative Care ECEPT Eastern and Central Europe Palliative Care Task Force EDC Education Development Center EFPPEC Educating Future Physicians in Palliative and End-of-Life Care ELNEC End-of-Life Nursing Education Consortium EOL End of Life EU European Union FBO Faith Based Organisation FONASA National Health Fund GDP Gross Domestic Product GP General Practitioner HAU Hospice Africa Uganda HBC Home Based Care HIV Human Immune Virus HIV Human Immunodeficiency Virus HIV/AIDS Human Immunodeficiency Virus/Acquired Immunodeficiency Syndrome HOB Hospice of the Bluegrass HOSPAZ Hospice and Palliative Care Association of Zimbabwe HPCA Hospice Palliative Care Association HPN Hospital Provincial Neuquen HSE Health Service Executive HSSP National Health Sector Strategic Plan IAHPC International Association of Hospice and Palliative Care ICAH Institute of Child and Adolescent Health ICCPO International Confederation of Childhood Cancer Parent Organizations ICD International Classification of Diseases ICPCN International Children’s Palliative Care Network Abbreviations xxiii

IHS Island Hospice and Bereavement Service IMCh Institute of Mother and Child IMCI Integrated Management of Childhood Illnesses IMF International Monetary Fund IMPaCCT Guidelines for Pain Management Issued by the European Association for Palliative Care IMR Infant Mortality Rate IPPC Initiative for Pediatric Palliative Care ISM&H Indian System of Medicine and Homeopathy JMC Joint Medical Clinic KFSHRC-R King Faisal Specialist Hospital & Research Centre – Riyadh KHCC King Hussein Cancer Center KKH KK Women’s and Children’s Hospital km Kilometre LHC Lodz Hospice for Children LLC Life-Limiting Condition LLD Life Limiting Disease LLI Life Limiting Illness LOL Laugh Out Loud LPHC “The Little Prince” Hospice for Children LRA Lord’s Resistance Army MAP Membership Assistance Programme MDG Millennium Development Goal MECC Middle East Cancer Consortium MEDICHI A Degree in Palliative Care Oncology Offered Through the Digital Learning Network MOH Ministry of Health MOHCW Ministry of Health and Child Welfare MPS Mucopolysaccharidosis MSW Medical Social Worker NACO National AIDS Control Organization NANEAS Multidisciplinary Committee in Charge of Organizing the Care of Children and Adolescents with Special Health Needs NATO Northern Atlantic Treaty Organisation NCI National Cancer Institute NCL Neuronal Ceroid Lipofuscinosis NFHS National Family Health Survey NGO Non-governmental Organization NHF National Health Fund NHPCO National Hospice and Palliative Care Organization NHS National Health Service NICE National Institute of Clinical Excellence NICU Neonatal Intensive Care Unit NMR Neonatal Mortality Rate NNPC Neighbourhood Network of Palliative Care xxiv Abbreviations

NSAP National Standards Assessment Program NZ New Zealand OE Open Enrollment OECD Organization for Economic Co-operation and Development OPD Outpatient Department OSI Open Society Institute OSI-NY Open Society Institute, New York OVC Orphans and Vulnerable Children PACC Program for All-Inclusive Care for Children and Their Families PBCR Population-Based Cancer Registry PC Palliative Care PCAU Palliative Care Association of Uganda PCS Palliative Care Services PCT Primary Care Trusts PCU Palliative Care Unit PCWG Palliative Care Working Group PedPalNET New Emerging Team: Transitions in Pediatric Palliative and End of Life Care PEOL Pediatric Palliative and End-of-Life PEPFAR President’s Emergency Fund for AIDS Relief PHC Primary Health Care PHO Primary Health Organization PIC:TFK Partners in Care: Together for Kids PICU Paediatric Intensive Care Unit PINDA National Child Antineoplastic Drugs Program (“Programa Nacional Infantil de Drogas Antineoplásicas”) PLWHA People living with HIV and AIDS PMTCT Prevention of Mother to Child Transmission POON Paediatric Oncology Outreach Nurse PPC Paediatric Palliative Care PPCPCC Pediatric Palliative Care and Pain Control Clinic PPCU Pediatric Palliative Care Unit PPM Paediatric Palliative Medicine PPOS Paediatric Palliative Outcome Scale PR and PC Pain Relief and Palliative Care PS Performance Status PSNZ Paediatric Society of New Zealand QoD Quality of Death RCGP Royal College of General Practice RCH Royal Children’s Hospital RCN Royal College of Nursing RCPCH Royal College of Paediatrics and Child Health RCPH Royal College of Paediatric and Health Care in London SAPP Specialised Out-Patient Paediatric Palliative Care SCCS Sarawak Children Cancer Society Abbreviations xxv

SCD Sickle Cell Disease SGB V Sozialgesetzbuch Fünftes Buch SGB XI Sozialgesetzbuch Elftes Buch SHA Strategic Health Authorities SickKids Hospital for Sick Children, Toronto SIG Special Interest Group SMA-1 Spinal Muscular Atrophy Type 1 SSA Sub-Saharan Africa TB Tuberculosis TPOG Turkish Pediatric Oncology Group TRAC-PG Team for Research with Adolescents and Children in Palliation and Grief U5 MR Under Five Year Mortality Rate UK United Kingdom UN United Nations USD United States Dollar VPPCP Victorian Paediatric Palliative Care Program VSK Very Special Kids WHC Warsaw Hospice for Children WHO World Health Organisation WTO World Trade Organization Part I Overview Chapter 1 An Overview of Pediatric Palliative Care

Caprice Knapp, Vanessa Madden, Lindsey Woodworth, and Susan Fowler-Kerry

Abstract Palliative care has long been a model of care that focuses on both patients with life-limiting illnesses and their family members. This is especially true in pediatrics where parents, siblings, grandparents and others are affected by a child’s illness. Yet, provision of pediatric palliative care around the world is scant. There are of course many reasons for this such as ﬁnances, lack of trained professionals, and a lack of general awareness by the public or policymakers. Despite these barriers, and many others, many countries have found ways to provide this care and those countries are both resource-rich and resource-poor. It is important for these countries to share their stories, which include valuable information on how barriers were overcome and programs were developed and implemented. Only through information dissemination will countries with no programs be able to learn from others and to identify strategies that they can use to help advance the pediatric palliative care movement worldwide.

Keywords Pediatric · Palliative care · Hospice · International · Comparisons · Barriers · Enablers · Provision · Development · Strategies · End of life

1.1 Introduction

Every day children around the world die. They die from a variety of causes such as malnutrition, accidents, complications of birth, AIDS, and cancer. No matter what the causes or circumstances, a child’s death always results in heartache, grief, and suffering for families and communities. Yet, there are a league of professionals whose sole mission it is to ease the hardships of these children at the end of life and to support family members through the grieving process. Countless doctors, nurses, social workers, psychologists, and advocates around the world work tire- lessly to ensure that children and families receive the best care possible under these difﬁcult circumstances. These committed individuals from multiple disciplines have

C. Knapp (B) Department of Health Outcomes and Policy, Institute for Child Health Policy, University of Florida, Gainesville, FL 32610, USA e-mail: [email protected]ﬂ.edu

C. Knapp et al. (eds.), Pediatric Palliative Care: Global Perspectives, 3 DOI 10.1007/978-94-007-2570-6_1, C Springer Science+Business Media B.V. 2012 4 C. Knapp et al. found a unifying bond in the field of pediatric palliative care. Born out of the modern day hospice movement of the 1960s, pediatric palliative care strives to care for children in a holistic manner. Not only are the children’s physical, emotional, and spiritual well-being of primary concern to these multidisciplinary teams, their families’ needs are considered just as important. Mothers, fathers, siblings, and grandparents just to name a few are also cared for by the team. As such, palliative care, and more importantly pediatric palliative care, is unique in the healthcare arena. Oftentimes healthcare is solely focused on a cure and providers are trained to diagnose, treat, and manage symptoms. Unfortunately, many patients have uncertain prognoses. Even the most skilled healthcare workers do not always know whether a treatment will be effective or if ultimately a cure will be found. When these uncer- tainties manifest themselves in inconceivable outcomes, such as a child transitioning to a terminal stage of illness, pediatric palliative care can be a light in an otherwise dark world. If pediatric palliative care, which is based on providing holistic support to the child and family, is such a laudable model of care then why is care not always available to all children? Should all children have access to programs in the area they live, and should these programs take into account their unique culture and environment? Children’s Hospice International has estimated that each year nearly 7 million children around the world could benefit from pediatric palliative care worldwide [1]. And while statistics of those who do receive care around the world are not readily available, it is widely understood that access to pediatric palliative care is limited. In a 2011 study, Knapp and colleagues conducted a systematic review of 117 published and unpublished resources on the provision of pediatric palliative care [2]. Using established definitions developed by the International Observatory for End of Life Care, the study classified all countries recognized by the United Nations into four levels of pediatric palliative care provision. Levels are ascending in nature whereby Level 1 indicates no known pediatric palliative care activities and Level 4 indicates multiple provision and integration with mainstream service providers. Results from the study suggest that 65.6% of countries around the world were at Level 1; 18.8% at Level 2; 9.9% at Level 3; and, 5.7% at Level 4. Not only was the lack of provision an important finding of the study, lack of information was also commonplace. For countries with no provision and scarce resources to develop a program, it is important to have an understanding of other countries’ experiences. By learning from each other, the international community has an opportunity to leverage their experiences and advance pediatric palliative care. Dissemination of information is always costly and lack of information can lead to inefficiencies and welfare losses in a society. A fundamental assumption of information dissemination models is that early adopters are willing to take risks if they expect increased returns on investment or better patient outcomes. Another assumption is that adoption is influenced by the size of one’s network. Having a wide circle of colleagues, networking opportunities, friends, and even family are linked to increased information dissemination. In the case of pediatric palliative care these assumptions mean that policymakers and healthcare providers must understand, or even experience firsthand, the benefits to patients and families in order to 1 An Overview of Pediatric Palliative Care 5 consider supporting them. The more quickly that evidence-based information becomes available and disseminated, the faster the cause will advance.

1.2 Book Structure

This book seeks to diffuse information about pediatric palliative care, by allowing countries to tell their own stories, to describe the benefits to patients and families in their own settings, to describe barriers and the strategies used to overcome them, to celebrate triumphs, to recognize pioneers in their field, and to describe a roadmap for the future. Oftentimes pediatric palliative care texts include one chapter on international experiences, making it difficult to describe an array of experiences or allow for in-depth explanations. The countries described in this book have diverse healthcare systems, geopolitical climates, levels of human development, and economic conditions. Yet, common themes abound. Countries face common barriers such as funding, education and training of providers, acceptance of palliative care by patients and families, and problems in forming organizations to advance the pediatric palliative care movement. Although there is an underlying theme of barriers throughout the chapters, there is also a common thread of persistence and success. The tenacity of the pediatric palliative care community is demonstrated in countries where several of these barriers have been conquered. Successful development and implementation of pediatric palliative care programs in resource-poor countries provides hope to those in similar circumstances. Moreover, successful integration of palliative care into the wider healthcare system in resource-rich countries demonstrates how even the most advanced societies can continue to push the boundaries of pediatric palliative care.

1.3 Chapter Highlights

Readers are encouraged to, and will want to, read the entire book to grasp the full range of countries’ experiences. However, the following information provides a few highlights of each chapter.

1.3.1 Africa

1.3.1.1 Malawi In all of the African chapters, it cannot be denied that the HIV/AIDS pandemic has played a role in shaping pediatric palliative care. The high rates of infection have been well-documented as well as some reasons for why they persist (e.g., migration patterns due to job seeking, lack of education, etc.). Children in Malawi are especially affected by the pandemic as they may become infected themselves, or they may have lost one or both of their parents. As a result of these trends, and inspired by 6 C. Knapp et al. a visit from Dr. Annie Merriman, three sites in Malawi developed pediatric palliative care programs.

1.3.1.2 South Africa South Africa is a superb example of how a resource-poor country can be successful in building and sustaining a national pediatric palliative care agenda. As in other African countries, poverty and HIV/AIDS have had perhaps the greatest impact on the need for pediatric palliative care. Politics and non-governmental organizations have also played a significant role. For the past 30 years hospices, both adult and pediatric, have been providing palliative care to children. Pediatric-specific facilities started in 1992 with Bloemfontein Children’s Hospice and by 2010 there were 60 children’s programs in South Africa. Not only are the numbers of facilities impressive, but advocates and members of the medical community have played a significant role in spreading pediatric palliative care to other African countries through the Hospice Palliative Care Association of South Africa and the African Palliative Care Association and sharing their experiences internationally through the International Children’s Palliative Care Network and the World Health Organization to name a few organizations.

1.3.1.3 Uganda Uganda has a low Gross Domestic Product (GDP) and high poverty rates. As a result of this and political turmoil, it has been difﬁcult for the country to meet the healthcare demands of its citizens. Recent healthcare policies are focused on public health and building infrastructure. For example, the recent 2010 National Development Plan was focused on health promotion, disease prevention, and early diagnosis and treatment of diseases. With such an emphasis on the provision of basic healthcare needs and services, it is impressive that pediatric palliative care has developed over time. Programs include independent services (such as Mildmay Uganda), inpatient services (such as those at Mulago Hospital), and home-based services. Although experts recognize the work that lies ahead, much has been accomplished in Uganda to care for children with life-limiting illnesses.

1.3.1.4 Zimbabwe The palliative care experience in Zimbabwe can be characterized by ups and downs. As GDP has fallen and risen over recent years, and with it levels of poverty, palliative care has been affected through the labor supply and funding. Yet, movement towards more palliative care for children has been steady. Palliative care was incorporated into the national Cancer Control Strategy, the children’s oncology ward at Parirenyatwa Hospital, and Island Hospice and Bereavement Service for example. Hospice and Palliative Care Association of Zimbabwe (HOSPAZ) has played a signiﬁcant role in pediatric palliative care. HOSPAZ works to set standards of care, increase capacity, as well as advocating for and coordinating palliative care in 1 An Overview of Pediatric Palliative Care 7

Zimbabwe. One of the major accomplishments of HOSPAZ, along with UNICEF, was to train about 60 partners in pediatric palliative care and antiretroviral therapy adherence.

1.3.2 Asia

1.3.2.1 Armenia Armenia is a young country having gained independence in 1991. However, the gain in independence was met by an economic crisis and emigration. Rebuilding the economy and the healthcare system has been slow, but steady. By 2006, Armenia spent just under 2% of its GDP on healthcare. Palliative care is a relatively new concept to Armenians having established a national organization devoted to the topic in 2003. Five years later several experts began to recognize the need in pediatrics, especially for children with cancer. Not only is this model of care new for the medical community, recent reports note that only 13% of parents in Armenia have even heard of palliative care. Though no formal pediatric programs exist, there are several pediatric services that provide some of the components of palliative care.

1.3.2.2 India India is one of the most populated countries in the world with about 1.15 billion people. Indian citizens are as diverse as they are numerous. With over 30 different recognized dialects and 28 states, India is truly an interesting and complex country. Pediatric palliative care is ripe for advancement in India with high levels of poverty and low levels of spending on healthcare and public health programs. Palliative care began to become recognized in the 1980s, but the same cannot be said for pediatric palliative care. Innovative programs in Kerala, Mumbi, Delhi, and Hyderabad have been developed. These programs provide information and support to a national pediatric palliative care agenda in its infancy.

1.3.2.3 Malaysia A multi-ethnic country in Southeast Asia, Malaysia has a low infant mortality rate and a long life expectancy as compared to other countries in the region. Malays spend 4.4% of their GDP on healthcare, which is provided by the government and private sector. As in most countries, adult palliative care was developed ﬁrst and that began in the early 1990s. Pediatric palliative care only recently has been recognized as a subspecialty in pediatrics and the uptake of this training has been limited. Much of the current work in Malaysia is focused on introducing the topic to pediatricians and making them more familiar with the ﬁeld. Currently, 10 of the 18 community- based palliative care programs accept pediatric patients. Other pioneering programs include Malacca General Hospital and Hospice Malaysia. 8 C. Knapp et al.

1.3.2.4 Middle East The Middle East Cancer Consortium was developed in 1996 with the goal of promoting palliative care services for adults and children. By combining the skills and expertise of regional members, the Consortium was able to conduct surveys of baseline information and perceived barriers to pediatric palliative care. Results from the surveys were used to develop standards of care and to build consensus among the group as how best to proceed. As the group builds on this momentum they are faced with unique challenges. Religion, culture, and tradition play signiﬁcant roles in the Middle East and each of these must be considered when training medical personnel and talking to families whose children have life-limiting illnesses.

1.3.2.5 Saudi Arabia Located in the Arabian Peninsula, Saudi Arabia is home to more than 27 million people and has some of the largest oil reserves in the world. A society steeped in the Islamic faith, Saudi Arabians access both modern and traditional healthcare in some areas of the country. Palliative care efforts began in the King Faisal Specialist Hospital and Research Center in Riyadh in 1991. Patients from neighboring countries also have access to this comprehensive and unique program. Growth in palliative care has to this point been concentrated in tertiary medical centers in large cities and there are now about 20 trained palliative care physicians. To date, no formal pediatric palliative care programs exist. However, a few pediatric oncologist/hematologists are pursuing sub-specialty training. Saudi Arabia is in the beginning stages of developing pediatric palliative care. However, there is interest in improving awareness, improving access, and building consensus. It will be interesting to see how the plans unfold and eventually become realities.

1.3.2.6 Singapore Singapore is an island in Southeast Asia. The country has a high GDP and an expensive cost of living. Although the health sector is well organized, it primarily funds inpatient care, resulting in a barrier for establishing pediatric palliative care programs outside of the hospital walls. In 2004, the ﬁrst children’s program was started at KK Women’s and Children’s Hospital. Children with cancer were the ﬁrst focus, but one-year later the scope of services were extended to treat non-cancer cases. This well-established program has allowed for training of staff, a bereavement support group in the neonatology department, and a homecare program.

1.3.2.7 Thailand Although the Thai government has a universal healthcare system, palliative care is not a current priority to receive funding. Yet, the demand for pediatric palliative care exists and any guidelines that exist to meet these demands are typically facility based (in academic, tertiary hospitals). There are functioning pediatric palliative 1 An Overview of Pediatric Palliative Care 9 care programs in six teaching hospitals, many of which evolved from programs for cancer care. For example, Srinagarind Hospital in northeast Thailand began a pilot project in 2004 to serve cancer patients and has since established the Srinagarind Palliative Care Unit, which is responsible for consultative services, education, and research efforts. Despite the integration of palliative medicine into the medical curriculum in some Thai medical schools, there is currently no formal post-graduate training or palliative medicine specialization. Among other barriers, there is a general lack of awareness of pediatric palliative care, a reluctance of parents to tell their children that they are dying, and the desire to have children die at home which requires additional coordination to ensure that the children’s pain and symptom needs are met.

1.3.3 Europe

1.3.3.1 Germany Germany has the oldest legacy in the world of social programs. Programs in the late 1800s were designed to address the healthcare needs of the poor, elderly, and disabled. Given the longstanding desire of the German government and populace to serve its most vulnerable citizens, it is not surprising that Germany has an advanced pediatric palliative care network. Inpatient and outpatient programs, including nine inpatient children’s hospices, currently exist. Important research has been conducted in Germany which explored staff and sibling experiences for children with life- limiting illnesses. Future goals of the pediatric palliative care community include continuing to insist that care for children be distinct from adult based palliative care, securing funding, and increased implementation across the country.

1.3.3.2 Ireland Ireland has the fifth highest Human Development Index in the world, a reflection of its high standard of living, education, life expectancy, and child welfare. All Irish residents are entitled to receive healthcare through the national public health service, which is funded by general taxation and provides free medical care for those receiving welfare, on low income, suffering from chronic illness, or pregnant. Ireland has the benefit of an agreed upon national policy for pediatric palliative care that was developed in 2009. The policy was initiated by the not-for-profit Irish Hospice Foundation that was also responsible for the development of three interdisciplinary pediatric palliative care training modules. Although a recent development, the national policy provides a framework for the way forward, with efforts concentrated on children’s hospitals (predominantly located in Dublin) and hospice- at-home services rather than free-standing children’s hospices. The recent economic crisis and the lack of national incidence statistics for children with life-limiting illnesses pose challenges to the implementation of the national policy. 10 C. Knapp et al.

1.3.3.3 Poland Poles are known for their independence and moral code which were shaped out of their historical experiences. Following the fall of the communist domination, a hospice movement began which was primarily backed by the Catholic church. Adult programs ﬁrst developed and pediatric programs followed about a decade later. Warsaw Children’s Hospice has endured many positive changes since its inception in 1994 including a growing staff, change in organization status, and the ability to receive public and private donations. Hospice staff took the lead to develop a groundbreaking training course that is free and attracts participants from other post-communist countries and around the world. Integrated pediatric palliative care remains a debatable model, whereby some hospices do not support it yet reports show that children have received services in those hospices for many years. A decree for pediatric palliative care has also been created but as of the writing of this book, it had not been endorsed by the Ministry of Health.

1.3.3.4 United Kingdom Many have recognized the United Kingdom as the birthplace of the modern palliative care movement. In regard to pediatric palliative care, the United Kingdom has more freestanding children’s hospices than any other country in the world. The National Health Service, though well organized and focused on providing the most cost-effective care, provides only a portion of the funding for children’s hospices and other palliative care programs. Charitable donations play a significant role. There is strong advocacy for pediatric palliative care from two national charities (Association for Children’s Palliative Care, Children’s Hospices UK) and the Association for Pediatric Palliative Medicine. Much work has been done to enumerate the number of children in need of palliative care, to define the categories of diagnoses that are life-threatening, and to document provision. Despite this success, there is still room for improvement for children in the United Kingdom. The recent hiring of the United Kingdom’s first professor in palliative care will allow for more coordination and strategy building of pediatric palliative care research across regions. The formal recognition of Pediatric Palliative Medicine as a specialty in 2009 also advances the cause of pediatric palliative care in the United Kingdom.

1.3.4 North America

1.3.4.1 Canada The Canadian healthcare system is perhaps one of the purest forms of universal health care in the world. In 1968 the Medical Care Act ushered in service provision for all citizens. As the healthcare system has evolved, so too has the pediatric palliative care movement. Currently, Canada has eight hospital-based programs and ﬁve free-standing hospices for children. Two more children’s hospices are under construction. In addition to the typical services offered, some of the programs are able to 1 An Overview of Pediatric Palliative Care 11 pay for travel costs and videoconferencing to prepare for hospital discharge. Grant- funded research in pediatric palliative care has been conducted. Most notably was the PedPalNET, a team of multidisciplinary researchers whom to date have produced numerous publications and presentations about their work. Finally, the Canadian Network of Palliative Care for Children works to promote education, clinical policies, and employment opportunities throughout the country. Challenges remain to ensure all children and families receive pediatric palliative services as needed. The countries’ expansive geography, as well as lack of funding, limits universal access to palliative care services.

1.3.4.2 Costa Rica Costa Ricans are proud of their universal Social Security system, introduced in the 1970s, that allows for almost universal health coverage. However, as recently as 20 years ago, Costa Rica lacked a national pediatric palliative care policy. In the early 1990s, three landmark events occurred to advance pediatric palliative care nationally. At this time national palliative care legislation was passed, the Pediatric Palliative Care and Pain Control Clinic (PPCPCC) was established in San José, and a nonproﬁt organization was established to support the expansion of the PPCPCC by providing additional resources to open 2 day centers, hire additional professional staff, and to buy medications, transportation, and medical equipment. Although there have been signiﬁcant advances, challenges remain including the lack of national incidence statistics on the number of children affected by life-limiting illnesses.

1.3.4.3 Mexico Mexico’s population is concentrated in several urban areas such as Mexico City and Guadalajara and also dispersed into small towns throughout the country. As such, communication and the development of healthcare infrastructure are difficult. Other barriers specific to pediatric palliative care are regionalization of services and lack of trained providers. Tertiary hospitals in Mexico City and Gudalajara have the most established programs for children with life-limiting illnesses. For example, the National Institute of Pediatrics in Mexico City was started 7 years ago and has served about 600 children to date. Hospital Civil Dr. Juan I Menchaca in Guadalajara also has a multidisciplinary team that provides care to children as well as education to residents. The hospital has served impoverished children with cancer while providing financial support to families as well as donated medications. Differences in location of death have been noted in research whereby children from more affluent families die in hospital while lower income children die at home.

1.3.4.4 United States of America For the past 30 years the United States of America has made signiﬁcant strides in providing palliative care to children. Progress has been made by many 12 C. Knapp et al. organizations such as the National Hospice and Palliative Care Organization, the American Academy of Pediatrics, the End-of-Life Nursing Education Consortium and Children’s Hospice International to name a few. Models of care differ by state and programs are funded by the government, private health insurance, grants, and donations. Unlike other areas in the world, there are currently no freestanding children’s hospices. Services are primarily delivered in hospitals, adult-based hospices, home health agencies, and community-based settings. Recently integrated pediatric palliative care began to be recognized and funded by a few states, by which palliative care is available to children from the point of diagnosis onwards. Although this model is not universal, early experiences are providing valuable information and may inﬂuence the spread of this model of care.

1.3.5 Oceania

1.3.5.1 Australia and New Zealand Australia is the world’s 13th largest economy with a high GDP and low levels of poverty. Like Australia, New Zealand has a high GDP and low levels of poverty. Healthcare in Australia and New Zealand is provided in private and government funded systems. In Australia, tax revenues are primarily used to fund the healthcare system and recent reforms have been focused on cost containment, an aging population, health inequities and healthcare workforce shortages. Australia has made great strides in starting to offer pediatric palliative care, especially in Victoria where there is a Pediatric Palliative Care Program, a children’s hospice, and services offered at tertiary hospitals. However, dispersion of the population over a large area is a signiﬁ- cant barrier to expansion of provision. In New Zealand, Starship Children’s Hospital in Auckland has led the way in pediatric palliative care since 1999. Advocates and the medical community are continually faced with challenges of ﬁnancing and training more specialists in pediatric palliative care.

1.3.6 South America

1.3.6.1 Argentina From the early 1990s, pediatric palliative care services began to be developed and implemented in Argentina. Two pioneering facilities have led the way in this movement: Garrahan Children’s Hospital and Victor J. Vilela Children’s Hospital. Later, a home-based program was developed in a General Hospital located in the Province of Neuquen. Not only have these programs provided an important example for others, they have engaged in health-related quality of life research and presentation of their work to national pediatric audiences and the Latin American Association of Palliative Care. These accomplishments are especially impressive given the recent financial problems in Argentina. In 2001, an economic crisis resulted in bank runs, 1 An Overview of Pediatric Palliative Care 13 high unemployment, high inflation, and significant increases in the number of uninsured citizens. The economy has slowly begun to regain momentum and focus can again return to advancing pediatric palliative care.

1.3.6.2 Brazil This chapter describes a fascinating, yet often overlooked, aspect of pediatric palliative care; care that is delivered in the pediatric intensive care unit. A striking contrast from most of the other chapters which are focused on care delivered in a community setting or the oncology ward in a hospital, the authors describe parental experiences, ethical supports, and the challenges that staff face in the pediatric intensive care unit. Despite these challenges, there are opportunities for advancing pediatric palliative care in pediatric intensive care units in Brazil as long as the focus remains on what is best for the family and ethical guidelines are followed.

1.3.6.3 Chile Chile has a unique population. Citizens are relatively young and primarily reside in urban areas. Healthcare is provided through public and private systems and the public healthcare system provides the majority of care to children. During the initial stages in the pediatric palliative care movement, the focus was on children with cancer. Many of these children suffer from pain throughout their illness and about one-half die at home. Health care reform played a signiﬁcant role in bringing more awareness to the public about palliative care. As part of the 2003 reform, health centers were mandated by law to guarantee access, opportunity, ﬁnancial support, and quality care within the public healthcare system. These tenets were applied to palliative care and serve as goals for the medical community and the government in Chile.

References

1. Children’s Hospice International (2008) Resources: an unmet need. Children’s Hospice International. www.chionline.org. Accessed 2011 2. Knapp C, Woodworth L, Wright M, Downing J et al (2011) Pediatric palliative care provision around the world: a systematic review. Pediatr Blood Cancer 57(3):361–368 Part II Africa Chapter 2 Pediatric Palliative Care in Malawi

Fred Chiputula and Zoe Palmer

Abstract Malawi is a country in Africa with low per capita income and a population that is concentrated in rural areas. Malawi, like many other African countries, has been signiﬁcantly affected by HIV/AIDS. Children are impacted by being orphaned and being infected themselves. Against a backdrop of poverty and a developing healthcare system, pediatric palliative care has started to emerge. A few programs exist, such as Umodzi a program located in Queen Elizabeth Central Hospital. Although a registry does not currently exist, Umodzi has the capacity to serve about 500 children per year, many of whom have malignancies. The program is multi-disciplinary and often interfaces with other clinicians in the hospital. Challenges facing pediatric palliative care in Malawi include a lack of trained professionals, a lack of funds, and lack of access to morphine. Yet, these challenges have not prevented the Umodzi team, as well as many others, in promoting and advancing pediatric palliative care in Malawi.

Keywords Malawi · Children · Palliative care · District hospital · Umodzi · HIV · AIDS · Life-limiting · Cancer

2.1 Introduction

Malawi is a land locked country in southeastern Africa, bordered by Zambia to the northwest, Tanzania to the northeast and Mozambique to the south, southwest and southeast. It lies between latitude 9◦ and 18◦ S and longitude 32◦ and 36◦ E. Malawi has a population of over 13.1 million, with a growth of 2.75% according to 2009 estimates [1]. The population consists of mixed tribes with varied cultural practices. Children constitute more that 52% of the population (children are deﬁned as all persons under the age of 18). Malawi is among the world’s least developed and most densely populated countries. The economy is heavily agriculture based with

F. Chiputula (B) Umodzi Children Palliative Care, Palliative Care Support Trust, Queen Elizabeth Central Hospital, Chichiri, Blantyre 3, Malawi e-mail: [email protected]

C. Knapp et al. (eds.), Pediatric Palliative Care: Global Perspectives, 17 DOI 10.1007/978-94-007-2570-6_2, C Springer Science+Business Media B.V. 2012 18 F. Chiputula and Z. Palmer around 85% of the population living in rural areas. Agriculture accounts for 35% of the gross domestic product, industry for 19% and services for the remaining 46%. Malawi has one of the lowest per capita incomes in the world. The childhood mortality rate is estimated at 59 deaths per 1,000 live births according to 2008 census report [2]. Recently, the prevalence rate of HIV/AIDS in Malawi has stabilized with an estimated 11% of the population living with HIV [3]. The AIDS crisis has affected all sectors of society in Malawi, but the following patterns have been identified as the epidemic has progressed. First, the majority of HIV infections in Malawi occur through heterosexual transmission. There is no available information about the number of infections transmitted through sex between men, as homosexuality is illegal, but indications from a small-scale study suggest prevalence may be much higher than previously thought. Second, there is a higher rate of HIV prevalence amongst women than amongst men. This is significant because around 60% of adults living with HIV in Malawi are female. Third, the majority of HIV infections occur amongst young people, particularly those between the ages of 13 and 24. In particular, the epidemic has greatly affected children. In 2009 an estimated 120,000 children in Malawi were living with HIV, and more than half a million children had been orphaned by AIDS. Fourth, HIV prevalence is around 17% in urban areas, compared to almost 11% in rural areas. However, studies suggest that prevalence is declining in many urban areas and rising in many rural ones. Finally, there is a high HIV prevalence amongst certain labour groups in Malawi, including sex workers (70.7%), female police officers (32.1%) and male primary school teachers (24.2%) [3]. Malawi has a Government Health System that provides free healthcare through health centers at the community level, district hospitals at each district headquarters and central hospitals in each region. In total the country has four regional hospitals, 24 district hospitals and 328 health centers that offer primary health services at the community level [2]. There is a total of 124 medical doctors to serve a population of 14 million people resulting in a ratio of one medical doctor for every 113, 000 persons. These shortages are seen in healthcare professionals of all types. The public health system has been severely impacted by the HIV/AIDs epidemic.

2.2 Life-Limiting Illnesses in Children

Prevalence of life-limiting illnesses in children is one area that needs to be explored. There is no proper registration of these illnesses by healthcare organisations or healthcare providers. There are many factors contributing to this lack in knowledge including: (1) limited diagnostic infrastructure to help with the conﬁrmation of diagnosis, (2) poor healthcare seeking behaviors among a large proportion of Malawians and (3) a shortage of skilled healthcare personnel to make thorough assessments of the children. Anecdotally, there are signiﬁcant indicators that many children in Malawi have life-limiting illness. For example, Queen Elizabeth Central Hospital in Blantyre, 2 Pediatric Palliative Care in Malawi 19 one of the regional hospitals in Malawi, registers over 150 new cases of childhood cancer per year. There are also other children who present with non-cancerous conditions such as neurological disorders, severe cardiovascular diseases and advanced HIV/AIDS all of whom are considered life-limiting. Provision of specialised care to children and families faced with the challenges of life-limiting illnesses is very limited as palliative care is an emerging concept in Malawi. Following a visit to Malawi by Dr Annie Merriman in 2002, the founder of Hospice Africa Uganda, three sites were sensitized and decided to take up the challenge of establishing palliative care services within their institution. These sites were: the Lighthouse Trust at Kamuzu Central Hospital, Ndimoyo Palliative Care Center in Salima district and Queen Elizabeth Central Hospital.

2.3 The Lighthouse Trust

The Lighthouse Trust is a registered trust in Malawi and operates as the largest HIV/AIDS management center situated at Kamuzu Central Hospital in Lilongwe. It is strategically situated in the central region of Malawi and close to the main referral hospital. The initiative evolved from a voluntary home based care team that was formed in the year 2000 to respond to the plight of many patients who were being discharged from the hospital in the advanced stages of HIV because during this period it was perceived by many, including healthcare workers, that there was nothing that could be done for these patients. Discharges from the hospital were aimed at reducing hospital congestion without regard to the prevailing symptoms that could be managed to improve the patient’s health related quality of life. Upon discharge, there were no plans for continuation of care and support. The Lighthouse Trust team, using their own private time, was able to follow-up with patients from within Lilongwe city in order to provide care and support while simultaneously mobilizing community support towards chronically ill patients receiving home based care. The team was also promoting HIV testing for as many people as possible so they would know their HIV sero-status. The services are integrated, linking follow-up care with preventive care. Until 2004, when Malawi secured funding from an international course there was no universal antiretroviral treatment in Malawi. At that time the funding served to scale up the use of antiretroviral therapy and to improve access to Highly Active Antiretroviral Therapy, which has since become free. When sensitization about palliative care was done through the Lighthouse Trust team, the healthcare community found it to be an appropriate model of care and began to integrate it within the existing home based care programs. Most of the patients in these programs were adults, with children constituting about 15% of the total patient census. Currently, there is no special children’s palliative care unit. Lighthouse Trust follows a public health approach and encourages members of one household to attend the clinic as a family. 20 F. Chiputula and Z. Palmer

2.4 Queen Elizabeth Central Hospital

Queen Elizabeth Central Hospital is located in the southern region of Malawi. This is the largest referral hospital in Malawi to palliative care programs. Dr Annie Merriman sensitized the team of healthcare personnel; among them was Professor Elizabeth Molyneux. Professor Molyneux is a professor in pediatrics and was at that time, the head of the Department of Pediatrics and Child Health. Professor Molyneux has worked on various initiatives at Queen Elizabeth Central Hospital including the establishment of a children’s oncology unit that is currently the only children’s oncology unit in Malawi [4]. In general, three treatment modalities are used in pediatric oncology: chemotherapy, surgery and radiotherapy. However, radiotherapy is not available in Malawi. In moving toward a cure, surgery is often used to extract solid tumors. Chemotherapy is also used to kill the malignant cancer cells, but will also kill normal cells of the body. This is especially problematic as it affects the rapidly dividing cells such as bone marrow, mucosa from the mouth and gastrointestinal tract and hair cells. In Malawi the word cancer evokes fear and is known as an incurable disease. This is due to many factors such as limited awareness of the early signs and symptoms of this malignant condition. Malawian cancer patients often exhibit poor health seeking behaviors whereby priority is given to tradition remedies. Under these conditions, patients often present to the hospital in very advanced stages of their illnesses. Palliative care then becomes the major aim of treatment when cure is no longer feasible. As part of a palliative care regime adequate pain control and control of other symptoms such as vomiting, as well as psychological, religious and spiritual support, are important to improve the patient’s health related quality of life. Often the child and parents will prefer to go home with the best available symptomatic control. Given these circumstances, the Department of Pediatrics and Child Health at Queen Elizabeth Central Hospital found it appropriate to mainstream the concept of pediatric palliative care. Implementation was done through a registered charity within the department called “Friends of the Sick Children”. The initiative was also given a vernacular name “Umodzi” which means togetherness- a call for unity with the wider community. The goal was to provide continued care and support for children diagnosed with life-limiting illnesses including cancer. Umodzi has evolved and become a unique model of pediatric palliative care in Malawi and the southeastern region of Africa. It is the only palliative care unit that has been established in Malawi to speciﬁcally provide palliative care to children. Umodzi has the capacity to initiate palliative care to about 500 children per year. Since the program began, there have been over 150 new admissions to the oncology unit alone. The other proportion of children present with neurological disorders as a result of cerebral Malaria, meningitis and viral encephalitis. Some children also present with severe cardiomayopaphy, advanced HIV/AIDS and severe congenital abnormalities. Among malignant diseases, Malawian children oftentimes are diagnosed with the following. Burkett’s lymphoma is a rapidly growing tumor, peak age is 4 to 7 years and it affects more boys than girls. It presents on the jaw, eye, abdomen 2 Pediatric Palliative Care in Malawi 21

(kidneys), paraspinal (can cause paraplegia, urinary incontinence), and is a relatively common childhood cancer in Malawi (roughly 50% of patients). Wilm’s tumor is a slow growing mass in the ﬂank. Clinically, the child usually remains in relatively good health. Peak age is 3 years and it is a relatively common tumor in Malawi. Patients are often found to have hypertension and (microscopic) haematuria alongside the malignancy. For children whose malignancies advance, metastasizes are often developed in the lung and less frequently the liver. Hodgkin’s disease is another common malignancy in Malawi. It usually affects adolescents as painless enlarged lymph nodes in the neck (80% of the nodes), often with a widened medi- astinum but can also involve other lymph nodes, lymph structures in the abdomen, groin and spleen. Symptoms include fever, night sweats, pruritus, and weight loss as the disease advances. In addition to Burkett’s lymphoma there are other common non-Hodgkin’s lymphomas such as lymphoblastic lymphoma, large B-cell lymphoma and anaplastic large cell lymphoma. Finally, children in Malawi present with acute and lymphoblastic leukaemia. Acute lymphoblastic leukaemia is the most common malignancy in our experience. Children present with signs and symptoms caused by bone marrow invasion of the leukaemic cell. Anemia, bleeding tendencies due to low platelets, fever due to reduced immunity and bone pain are common symptoms. The history of these symptoms is usually short oftentimes only a few weeks. Other less common types of cancers that are found in Malawi include Neuroblastoma, Rhabdomyosarcoma, Retinoblastoma, Hepatocellular Carcinoma, Osteosarcoma, Germ cell tumor, and Kaposi’s sarcoma.

2.5 Provision of Services – Umodzi, a Pioneering Service

The concept of palliative care is relatively new and poorly understood in Malawi. Awareness of pediatric palliative care has so far been conﬁned to a small group of individuals. Umodzi is a pioneering program and provides the following services.

1. Symptom control for a range of problems including pain. Umodzi purchases some drugs that are not available from pharmacies and dispenses morphine. 2. Discussion with patients and families at the bedside and in the privacy of the Umodzi office. 3. Assistance for carers with nursing tasks while their child is in an inpatient setting. 4. Facilitate and supervise play in the playroom and on the ward for those children confined to bed. 5. Small, discretionary grants of food or money are made to those with immediate financial difficulties. 6. Liaison with rehabilitation services at Queen Elizabeth Central Hospital physiotherapy department, including provision of equipment like chairs or walking frames for children with neurological disorders. 7. Bowel and bladder training for children with incontinence. Provision of plastic pants and waterproof bed liners for those who remain incontinent. 22 F. Chiputula and Z. Palmer

8. Home visits for patients who are unable to return to the hospital but need ongoing help. 9. Referral to other providers of palliative care on discharge, including teams at other hospital sites and community based organisations.

The Umodzi team currently consists of two clinicians, two nurses, and a play lady. The clinicians conduct ward rounds, with the speciﬁc responsibilities of making clinical decisions about treatment options and prescribing drugs. There is a positive relationship between clinicians on the wards and the palliative care physicians, who also collaborate in other areas of the pediatric department’s work, for example with teaching and presentations. It takes effort to maintain good working relationships within a department where all the clinicians are taking on many commitments and a large burden of clinical work. The Umodzi nurses have the most contact with patients and families, as they are based on the wards. They assess symptoms, assist carers with nursing care, check that medication is given correctly and are the main point of communication with patients and their families. A play lady supervises activities in a playroom that is equipped with toys, books and a portable DVD player. She plays with children who are conﬁned to bed and is a resource to the antiretroviral therapy clinic where she plays with children who are waiting for appointments. Working within a hospital, the team liaises with other departments such as the physiotherapy department, who provide basic rehabilitation for children. Umodzi networks with organisations that can input useful skills and manpower to the team. There has been a visiting rehabilitation technician from a local non-governmental organisation, but this service has recently been withdrawn due to lack of funds. There is an ongoing co-operation with a Montesorri faith based organisation that is contributing staff to play with children for several sessions per week. A teacher is also employed by the pediatric department who is accessible to any child admitted to the hospital, including palliative care patients. Other professions who would be represented in a multi-disciplinary team are currently not practically available to the pediatric palliative care program. Although there are social workers in Malawi, they are few in number and largely committed to child protection. There are no child psychologists or psychiatrists in Malawi and no chaplaincy service in the hospital. There are very few rehabilitation services throughout Malawi. Physiotherapists exist only when trained abroad, and they practice either as short term volunteers with non- governmental organisations or in private hospitals. Currently, there are two speech and language therapists in the whole country.

2.6 Training

Avenues for accessing training have so far included clinicians completing the Distance Learning Diploma in Palliative Care, offered by Hospice Africa Uganda in conjunction with Makerere University and African Palliative Care Association 2 Pediatric Palliative Care in Malawi 23 in Kampala, Uganda. However, this training program is costly and enrollment is only possible with the aid of training grants for each individual. Bursaries have enabled clinicians to attend international pediatric palliative care conferences with some training incorporated into the meetings. At present, Malawi has had 13 clinicians and nurses who have completed the Distance Learning Diploma in Palliative Care and eight other healthcare personnel have enrolled into the 2010 cohort with one of them pursuing a second year of study towards the newly introduced Degree for Palliative Care in Africa. There is a palliative care training manual that was developed by the Ministry of Health and members from the Palliative Care Association of Malawi. The manual was tested in two trainings, gaps were addressed, and it has been edited and is ready for use. There is a generic adult based 5-day palliative care course offered period- ically in Malawi that is available to nurses and clinicians, but it has no pediatric component. The Ministry of Health and its stakeholders are currently in the process of developing national palliative care guidelines. Some progress has already been made towards that goal and at present there is a draft copy available for editing. In addition, most of the palliative care for adults in Malawi is done by Home Based Care Volunteers at the patients’ homes, and if the needs of children and their carers are to be met, these volunteers will also need to be trained in pediatric care. Umodzi staff has found Palliative Care for Children in Africa edited by Dr Justin Amery, the Beating Pain handbook, and the Oxford Textbook in Children’s Palliative Care to be quite useful. Malawi requires a speciﬁc training curriculum that is relevant to the country’s situation, and equips health professionals and play assistants who work in a district hospital setting with the tools needed for success. These trainings will be offered by the Help the Hospice program and the International Children Palliative Care Network through our national palliative care association sometime later in 2011 in an effort to advance pediatric palliative care in Malawi. This new project is underway and was developed by Help the Hospices and funded by the Department for International Development. The aim of the project is to see pediatric palliative care incorporated in the remaining three regional referral hospitals in Malawi using the Umodzi model of care used at the Queen Elizabeth Central Hospital. The role of Umodzi in the project will be to provide mentorship to the upcoming pediatric palliative care centers through training and clinical placement.

2.7 Research

Currently, there are no research efforts underway concerning pediatric palliative care in Malawi. The clinical team from Umodzi is currently prioritizing service provision in a setting where referrals have doubled over the past 2 years, and yet there are still children in the hospital who are not identified as needing palliative care when they would in fact benefit from the service. The first step towards conducting research 24 F. Chiputula and Z. Palmer would be to set up a database so that an audit could be more easily performed. Since the program is set within a College of Medicine, Umodzi has access to assistance from professionals, but dedicated funding would be needed to support research, mainly to pay for labor costs.

2.8 Health Policies

A number of health policies specific to pediatric palliative care are described in this section. Many of the policies are directed though an office in the Ministry of Health Policy responsible for home based care, which has up to now mainly focused on adult home based care services. Malawi as a country chose home based care as a suitable model to deliver effective palliative care. All efforts to scale up palliative care in Malawi are therefore coordinated by the Ministry of Health through the national home based care desk officer. Morphine has been available to palliative care providers since 2002, initially pro- cured by the Lighthouse Trust, but more recently by the Ministry of Health. The intention is that morphine should be stocked in all the district hospitals through the central medical stores. Plans are underway to clarify the supply chain and district hospitals will be encouraged to procure morphine for their dispensaries. This initiative highlights the need for accompanying training for potential prescribers if access to morphine is to be improved. A specific grant has allowed representatives from Umodzi to meet District Management Teams in the southern region of Malawi to advocate for inclusion of children’s palliative care into their plan for healthcare provision. If successful, this would be an important landmark in the process of establishing pediatric palliative care in mainstream public healthcare provision. If this coincided with improved morphine availability, there could be a significant impact on the provision of palliative care with effective analgesia. There is a network of other health service delivery facilities run by faith based institutions under the Christian Health Association of Malawi that supplements the government health provision with a higher quality of service at a relatively low cost. Representatives from some of these hospitals have attended a day course on the subject of opiates, and do have access to morphine. Non-governmental organisations also provide a variety of health services, many related to orphan care or HIV treatment, which may be providing some level of palliative care but without access to morphine as of yet. Finally, the national organisation Palliative Care Association of Malawi has a significant role in advocacy and health policy. A new position has been created this year based at the Palliative Care Association of Malawi offices, with a remit that includes advocacy for pediatric palliative care, conducting training, and establishing three new sites which will provide palliative care in central hospitals. 2 Pediatric Palliative Care in Malawi 25

Case Study The purpose of reviewing this case is to examine how well our hospital based palliative care service is integrated within the hospital service. In order to identify patients needing palliative care, we need for clinicians to accept and refer to our services. Once patients are discharged from the hospital the challenge is to continue to work collaboratively so that patients receive both specialist pediatric care from the acute specialist, alongside our palliative approach. Kelvin aged 11, was referred to Umodzi by his cardiologist while an inpatient. His diagnosis was a type of progressive muscular dystrophy that is inherited genetically. As part of the disease he also had cardiomyopathy. He had problems with weakness in his legs, and occasional breathlessness. He recovered some strength in his legs with steroid treatment and Umodzi spoke to his family about the nature of his illness. He was then discharged to his home. Four weeks later he was readmitted with severe breathlessness. He improved with treatment for his heart failure, but developed a cough and vomiting. Umodzi was involved with treating his vomiting using domperidone which the team purchased since it is not available in the hospital’s pharmacy. The Umodzi play lady supplied him with books and puzzles and spent time with him on the ward. The team also liaised with his cardiac specialist when he was moved to a different ward to make sure that the correct management continued even when staff was unfamiliar with his problems. His parents were kept informed about his treatment goals and they advocated that inappropriate investigations should not be performed. He was discharged to his home at Umodzi’s instigation with a care plan that the team would visit him at home. After discharge a total of three home visits were made over the next 6 weeks. He was found each time to be gradually deteriorating as noted by increasing weakness and edematous. The visiting Umodzi team supplied drugs as they ran out, and pain relief as needed. Throughout his inpatient admission the team discussed management with the ward doctors including his cardiologist. The team planned his discharge together and continued to collaborate about his case once he was home and deteriorating. His parents were able to keep him at home while still having his condition optimized by the team who made adjustments to his medication. Eventually, Kelvin passed away. After his death the team visited his mother to ask her what she had found helpful about the care the family had received and what could have been improved. She thought that Kelvin had most appreciated being visited at home so that he did not have to travel to hospital or be admitted again. 26 F. Chiputula and Z. Palmer

References

1. Malawi National Statistical Ofﬁce (2011) http://www.nso.malawi.net/. Accessed 2011 2. Ministry of Health (2011) http://www.hivunitmohmw.org/. Accessed 2011 3. National AIDS Commission of Malawi (2011) http://www.aidsmalawi.org.mw/. Accessed 2011 4. Paediatric Oncology Ward (undated) Practical manual for the management of children with cancer. Queen Elizabeth Central Hospital, College of Medicine, Blantyre, Malawi Chapter 3 Paediatric Palliative Care in South Africa

Joan Marston, Busi Nkosi, and Annanda Bothma

Abstract South Africa is a pioneer in paediatric palliative care in Africa. For the past 30 years advocates, the medical community, organizations, and the government have worked together to advance paediatric palliative care. One cannot deny the great need for palliative care given the impact that HIV/AIDS has had on the South African society. Yet, even under circumstances of poverty, infrastructure building, and high HIV/AIDS rates, the provision of paediatric palliative care continues to expand. As of 2010, there were 60 programmes providing paediatric palliative care under a variety of models. Despite this success, South Africa continues to face challenges in providing care to children with other life-limiting illnesses other than HIV/AIDS and having an adequate number of health care workers. As the country grows and develops economically, this also may have negative impacts on paediatric palliative care as donors may divert funds to other countries perceived to have greater needs. Finally, it is important to realize the role that the Hospice Palliative Care Association (HPCA) of South Africa has played in expanding paediatric palliative care. HPCA made the decision in 2007 to hire a paediatric manager which has allowed for the organization to speciﬁcally focus on, and create a strategy for, the expansion of paediatric palliative care.

Keywords South Africa · Paediatric · Palliative care · HIV/AIDS · Hospice

There can be no keener revelation of a society’s soul than the way in which it treats its children. Nelson Mandela

3.1 Developing a National Strategy

Hospices in South Africa have been caring for children within traditionally adult- focused programmes for the past 30 years. Children’s palliative care had been slow to develop until 2007 when the Hospice Palliative Care Association of South Africa (HPCA) made a strategic decision to include a paediatric portfolio with a paediatric

J. Marston (B) International Children’s Palliative Care Network, Bloemfontein, Free State 9301, South Africa e-mail: [email protected]

C. Knapp et al. (eds.), Pediatric Palliative Care: Global Perspectives, 27 DOI 10.1007/978-94-007-2570-6_3, C Springer Science+Business Media B.V. 2012 28 J. Marston et al. manager, to support the development of palliative care services for children in South Africa. This decision was stimulated by the increasing number of children with the Human Immunodeficiency Virus (HIV) and Acquired Immune Deficiency Syndromes (AIDS) referred for hospice care. An appraisal of palliative care services for children was carried out in 2007 and identified only seven programmes that provided paediatric palliative care (PPC) including Cotlands in Johannesburg and Somerset West, Beautiful Gate and Themba Care in Cape Town, St. Nicholas Children’s Hospice in Bloemfontein, Ingwavuma Orphan Care in Ingwavuma, Kwazulu-Natal, and the Bigshoes Foundation in Johannesburg [1]. Most hospices had children with HIV and AIDS in their care, but had little or no understanding of the differences between adult and children’s palliative care, and were treating children as “little adults”. At that time the only training in children’s palliative care was a 5-day introductory course administered by HPCA from 2005, through their Centres of Palliative Learning (CPL). However, very few courses had been presented by the CPL tutors.

3.2 The Need for Children’s Palliative Care in South Africa

Children make up 44% of the total population of South Africa; there are 18 million children under the age of 18 years. While fairly reliable statistics are available for children infected with HIV, as of 2010 there were 300,000 children with HIV, data on children with other conditions requiring palliative care is difficult to obtain [2]. The National Department of Health in their Policy Framework for non-communicable chronic conditions estimates the prevalence of chronic illness in children as 20% of all children. Those requiring palliative care is an estimated 20% of that number, (i.e., 720,000 children). The Childhood Cancer Foundation (CHOC) estimates that one in 600 children will present with cancer or approximately 30,000 children. CHOC states that 70% of these children will present too late for effective treatment. Figures for people living with disabilities suggest that there are 100,000 children with different disabilities in South Africa [3]. National data is not available at present for all other conditions in children requiring palliative care. However, the total number of children with HIV; children with non-communicable chronic conditions; and the number of children with disabilities adds up to about 1,120,000 children who would benefit from palliative care services [3]. Furthermore, childhood mortality varies according to race and area, with deaths in rural African communities almost double those in urban areas. Mortality in children under 1 year is very high at a mean of 94 per 1,000 live births; and mortality in children under 5 years at a mean of 66 per 1,000 live births [4]. While the South African government has committed to the Millennium Development Goals (MDGs) it would appear that the country may not reach its MDG 4 target to reduce the under-five deaths to 20 per 1,000 live births by 2015 [4]. 3 Paediatric Palliative Care in South Africa 29

The most common causes of death in children under five are HIV-related conditions such as diarrhoeal diseases, lower respiratory infections, Tuberculosis (TB), and problems around the neonatal period including low birth weight, pre-term births, and birth asphyxia. Malnutrition is often a contributing factor. Sixty percent of children who died in the under-five age group were underweight for age, and one-third of these children were classified as severely malnourished. Additionally, 60% of all South African children live in poverty which contributes to malnutrition. In children over five, injuries were the most common cause of death, followed by undefined natural causes and TB.

3.3 The History of Children’s Palliative Care Development in South Africa

The progress of the HIV/AIDS epidemic, which led to an increasing number of children born with HIV, was the stimulus to the development of individual children’s palliative care programmes. The ﬁrst programme to provide palliative care to children began in 1992 at the Bloemfontein Children’s Hospice. This was followed 5 years later by the establishment of a paediatric palliative care programme at Cotlands, and in 1998 by the opening of the Sunﬂower House at the St. Nicholas Children’s Hospice. More programmes were established during the years 2000 through 2008 and by the end of 2008 there were 18 hospices with children’s palliative care programmes operating in South Africa. 2009 was another stimulating year in the development of children’s palliative care and saw the development of 36 children’s palliative care programmes. By the end of 2010 there were 60 organisations, including hospitals, providing some level of children’s palliative care. The history of children’s palliative care development in South Africa is further described below, and highlights, by year, the major developments of palliative care programmes in South Africa from 1992 to 2010.

1992 Bloemfontein Children’s Hospice (at that time part of Bloemfontein Hospice) was the ﬁrst known programme providing palliative care to children. This began in 1992 as a home care and day care programme. Training courses were also presented in aspects of children’s palliative care, such as pain and symptom management, emotional and social care, communication and bereavement in children. 1997 The increasing number of children with HIV led to the development of children’s palliative care in South Africa. In 1997, Cotlands, a home for abandoned and abused children in Turfontein, Johannesburg, opened a hospice ward for these children, as without access to anti-retroviral therapy (ART), Cotlands was experiencing a high number of infant and child deaths. Cotlands now has a comprehensive programme with inpatient, home and day care services, and a second Cotlands care centre in Somerset 30 J. Marston et al.

West in the Western Cape. Palliative care is part of a range of services offered by Cotlands to orphaned and vulnerable children [5]. 1998 Bloemfontein Children’s Hospice gained an independent identity when it was renamed The St. Nicholas Children’s Hospice, opening Sunflower House as an inpatient unit providing 24-h care for children who could not be cared for in home care. This was an innovative partnership with the Free State Provincial Department of Health, and is in the grounds of the National District Hospital, strengthening the partnership with the formal health sector. The district hospital, and the Department of Family Medicine, provide a range of services to the children in Sunflower House, including a very strong occupational therapy programme for the children, many of whom are developmentally delayed. 2000 Dr. Ann Dean, working at the district hospital in Ingwavuma, high up in the Lebombo mountains in rural KwaZulu-Natal, became concerned about the number of children admitted with severe malnutrition, often related to HIV in the child and/or the mother. She formed a working committee of representatives from the Departments of Health, Welfare and Agriculture, and trained community members to provide palliative home-based care for these children, many of who had been orphaned by AIDS. Ingwavuma Orphan Care was formed, covering a very large rural area, and has recently been renamed Isibani Sethemba – Light of Hope. 2000 St. Nicholas Children’s Hospice in Bloemfontein responded to the developmental needs of their small patients by initiating three Community Palliative Day Care centres in homes in informal settlement areas, where children receive palliative care and developmental stimulation. This was supported by Save the Children (a UK foundation) and has led to the establishment of a number of hospice children’s day care centres around South Africa. Through these programmes children are prepared for school and enjoy a stimulating environment where they are able to learn through play and other activities. 2002 Themba Care, part of the Thembalitsha Foundation, opened a small unit to care for babies and children with HIV in Athlone, Cape Town. Themba Care continues to focus on providing palliative care to children with HIV and has opened a project in Grabouw caring for both children and adults. 2002 HPCA appointed their first advocacy officer who included advocacy for children’s palliative care in all advocacy activities. 2003 Hospital-based palliative care for children has been led and championed by the Bigshoes Foundation, previously the Children’s Homes Outreach Medical Programme or CHOMP that was established in 2003 and renamed in 2006. Bigshoes provides medical interventions that enable orphans and vulnerable children (OVC) to grow up and fill big shoes. Their programmes include paediatrician-run clinics, paediatric palliative 3 Paediatric Palliative Care in South Africa 31

care, training, and an abandoned baby project. Bigshoes is active in Johannesburg, Durban and Cape Town, where the Director, a paediatrician, Dr. Michelle Meiring, provides a paediatric palliative care service to the Red Cross Memorial Children’s Hospital and other hospitals in the region. Bigshoes also established a paediatric inpatient unit in partnership with the Hospice Association of the Witwatersrand in Johannesburg and helped the hospice to establish a children’s unit as part of Soweto Hospice. 2005 The Diana Princess of Wales Memorial Fund (DPOWMF) funded the development of the first curriculum for an Introduction to Children’s Palliative Care which is a 5-day theoretical course for professionals. 2006 Sue Boucher, a specialist in early childhood development and a member of the national paediatric advocacy committee for HPCA, produced a Handbook on Early Childhood Development and Palliative Care for Children, to provide guidance to hospices caring for children. Children with HIV are often physically, intellectually and emotionally delayed and require extra stimulation and attention. 2007 HPCA established a new paediatric palliative care portfolio and appointed a Paediatric Portfolio Manager with funding from the DPOWMF. An assessment of palliative care services was carried out and a national strategy developed to increase access to palliative care for children with life-limiting and life-threatening conditions through education, advocacy, material development, and using existing programmes as models for development. 2008 This was a very active year in the development of palliative care for children in South Africa. By the end of 2008 there were 18 hospices with children’s palliative care programmes. Furthermore, four advocacy activities occurred that further shaped paediatric palliative care provision in South Africa. First, the President’s Emergency Plan for AIDS Relief (PEPFAR) provided funding for OVC and a paediatric officer was appointed to support the development of children’s palliative care services within existing member hospices of HPCA. In 2009 and 2010 additional paediatric officers were appointed. Second, a Toolkit for Children’s Palliative Care was produced by HPCA and the International Children’s Palliative Care Network (ICPCN) to provide guidance and to support programme development. This project was funded by the DPOWMF. Third, the St. Nicholas Children’s Hospice accessed PEPFAR funding to establish a network of palliative care services for children in the Free State province, and set up a children’s palliative care education and resource centre, working in partnership with the Departments of Health and Social Development; Departments of Family Medicine and Paediatrics; government hospitals; faith-based organisations and Rotary. The St. Nicholas Bana Pele Network (Bana Pele means Children First in Sesotho) now covers the whole province and includes all hospices with children’s 32 J. Marston et al.

programmes and a number of non-hospice organisations. Fourth, PPC professionals from a number of African countries were convened to work with Dr. Justin Amery on writing the first African textbook on paediatric palliative care entitled “Children’s Palliative Care in Africa” [6]. Dr. Amery is a UK physician and previous medical director of Helen House Children’s Hospice in Oxford, UK, who had worked at Hospice Africa Uganda and realised the need for such a textbook. This textbook formed the foundation for the development of a curriculum to train members of the multi-professional team. 2009 This year saw the development of 36 children’s palliative care programmes. Advocacy activities focused on influencing government departments of health and social welfare to include palliative care for children as an essential part of children’s care. Once again initiated by the DPOWMF a project was established to develop Beacon centres for children’s palliative care in three countries, to implement the new curriculum and roll-out training to government services and other organisations. The programmes selected for this project were Mildmay in Kampala, Uganda; PASADA in Dar es Salaam in Tanzania; and HPCA in South Africa, making use of all their training centres and a web-based Virtual Resource Centre, the Baobab children’s palliative care website [7]. Each programme appointed two navigators to lead this development and to establish active advocacy strategies in each country. Alongside the development of the curriculum for professionals, a curriculum for community caregivers was initiated by DPOWMF in 2009. The research for this development has been led by Dr. Laura Campbell working together with Oxford University, the Health Sciences Research Council and HPCA. The curriculum has been completed and piloted and should be available in 2011. The textbook entitled “Children’s Palliative Care in Africa” was launched at the first children’s palliative care conference in Africa. The conference was organized by the ICPCN, HPCA and Children’s Hospice International and was located in Cape Town, stimulating interest in the discipline from a number of African countries. From 2009 a project was established by the ICPCN with funding from the Open Society Institute’s International Palliative Care Initiative, to bring health care professionals from other African countries for training and clinical placement in South Africa. Health care professionals have been trained from Malawi, Tanzania, Uganda, Zambia, and Kenya. 2010 The HPCA Navigator and a Paediatric Clinical Education Officer have provided training to 100 health care professionals in South Africa. The training involves 2 weeks of didactic teaching and a number of assignments and clinical placements. Assessment is through a written 3 Paediatric Palliative Care in South Africa 33

examination and practical application of knowledge. Sixty more professionals were trained by navigators in Uganda and Tanzania at the two Beacon centres. Four cluster sites have been established for comprehensive clinical placements. At the end of 2010 these included Johannesburg, Cape Town, Bloemfontein and Durban. From 2011 an additional site will be established in Grahamstown. The cluster sites consist of a hospice or hospices with an inpatient unit, home-based care, day care and bereavement services; a hospital; a clinician with children’s palliative care training and/or experience; and a university link. Kings College London published a research report on the status of paediatric palliative care in sub-Saharan Africa [8]. The report identiﬁed the need for research and documentation of programmes and projects. Whilst much is happening, very little is documented or researched. The report also highlights the need for a public health approach to the care of children with progressive, incurable and life-limiting conditions, in the light of the high infant and child mortality rates. At the end of 2010 there were 60 organisations, including hospitals, providing some level of children’s palliative care. Many of these are in the Free State province as a result of the St. Nicholas Bana Pele Network project.

3.4 Challenges to the Provision of Palliative Care for Children

Children with life-limiting or life-threatening conditions in South Africa have many advantages over children in most other African countries. All the basic medications for the treatment of pain and other distressing symptoms are on the Essential Medicines Lists; families have access to child support grants; there is a grant for children with disabilities; health care for children under 6 years is free; the national hospice and palliative care association, HPCA, is a strong and rapidly expanding association, with member hospices in all nine provinces of South Africa; international funders have supported the development of children’s palliative care, and the government is slowly recognising the role that palliative care has in improving the lives of children with life-limiting illnesses. Training in palliative care is available for health care professionals including social workers. Despite all these advantages, there are still challenges that need to be overcome and there are still far too many children who do not receive palliative care. The greatest challenge is maintaining a quality palliative care service whilst expanding coverage and increasing access to palliative care for children. To further this goal, the HPCA has developed a strict assessment and accreditation programme based on standards of care, management, governance and administration. This includes aspects of children’s palliative care and HPCA members can progress through to Five Star status. Furthermore, research initiatives exist to start measuring 34 J. Marston et al. the quality of paediatric palliative care provision. Working in collaboration with the African Palliative Care Association (APCA) a Paediatric Palliative Outcome Scale (PPOS) has been alpha and beta piloted in Soweto Hospice and Isibani Sethemba in Ingwavuma. The validated APCA PPOS will be valuable in assessing the quality of the palliative care received by children in hospice and palliative care programmes. Major challenges to children receiving palliative care include:

1. About 300,000 children are HIV positive; but five million adults are as well. The overwhelming need for palliative care to be provided to such a large number of adults has impacted negatively on children. Hospices and other organisations focus human and financial resources on adults, and children may then be seen as either unimportant or needing resources that the organisations do not have. 2. Training in palliative care for children is still developing and there is an urgent need to promote the training more extensively to reach more professionals and organisations, and ultimately more children. 3. As children with HIV and AIDS are by far the largest group requiring palliative care, children with other life-limiting and life-threatening conditions are often not identified nor admitted to palliative care programmes. 4. South Africa has a shortage of health care professionals in all fields; this impacts the quality of health care services. 5. Palliative care for children is not included in undergraduate training of doctors and nurses. 6. Health care professionals often say they are afraid of caring for children with life-limiting illnesses and do not feel competent to do so. Fear of providing opioids to children means that children do not get the pain control that is needed. 7. Whilst South Africa is now classified as a middle-income country, 60% of South African children still live in poverty. The income classification means that donors are reducing their support to South Africa, despite the extent of the need. 8. Access to children living in rural areas is often difficult due to the terrain and poor roads in those areas. 9. Children living in areas of high crime and children living on the streets are groups that are not reached by palliative care services. 10. Many children who are patients are also orphaned due to HIV. South Africa now has an estimated 1,900,000 children orphaned due to AIDS. 11. Children, parents and health care workers suffer multiple bereavements which affect them emotionally and impact on their capacity to care [6]. Memory work is provided in a number of organisations throughout South Africa. 12. Many children live in vulnerable households which may be headed by other children or elderly relatives. Supervision of treatment may not be adequate and emotional support to the child may not be provided. 13. ART has only been available in government facilities since 2005, and whilst South Africa is said to be the country with the highest number of HIV 3 Paediatric Palliative Care in South Africa 35

infected people on ART, coverage of children lags behind adults, although it is improving. 14. Provision of palliative care must include services to improve the social circumstances of the child and to help the child develop as normally as possible. This has led to hospices developing innovative programmes of care and support. Conversely, at times, these other programmes may dilute the quality and quantity of the palliative care service. 15. Neonatal and perinatal palliative care is almost non-existent despite the high infant mortality rate in South Africa. 16. Spiritual care of life-limited children is poorly understood and there are few clergy or spiritual carers who are active in this ﬁeld. A recent study identi- ﬁed few programmes with active spiritual care as part of multi-professional care [9].

3.5 What Is Still Required to Improve Access to Palliative Care for Children in South Africa?

For the long-term sustainability of palliative care for children, training in this discipline needs to be included in all undergraduate and relevant post-graduate training of all health care professionals, psycho-social professionals and clergy. Advocacy for this is taking place and there are promising developments in Gauteng, Western Cape, Free State and Kwazulu-Natal. Government policy must include palliative care for children as part of the essential package of care. At present palliative care is included in the National Strategic Plan for HIV, AIDS, TB and Malaria; and in the National Cancer Control Policy; but policies for children are not specified in either document. A government budget needs to be provided specifically for children’s palliative care, and children’s palliative care services should receive government support; at present this support is small. Models of good practice should be formally identified and replicated. Organisations other than hospices should be trained to provide palliative care for children or to network with a palliative care programme. Faith-based organisations reach more children than any other group and are often the only organisations in rural communities. They are an important group with which to network and collaborate.

3.6 Different Models of Palliative Care Provision to Children

There are a number of exciting and innovative projects in South Africa, each developing to meet the needs in the different communities, in line with available resources and the vision of the person or group that developed the service. Whilst no two services are the same, all have as their aim improved quality of life and relief of 36 J. Marston et al. suffering. All services base the provision of palliative care on the World Health Organisation (WHO) deﬁnition of palliative care for children [10]. The various models of paediatric palliative care service delivery in South Africa include:

• Single service models. These may be only home-based care; day care or a children’s inpatient unit. Morning Star in Welkom in the Free State, began as a Day Care programme for children who were HIV positive in 2000, and has expanded to provide formal schooling for young children. Children are collected from home in the morning and returned home in the afternoon. Nutritional support is given to the child and also to the families in need; and families are helped to generate income through a craft development project. Themba Care in Athlone, Cape Town provides care within a well-designed inpatient unit for babies and children, and participates in the training of medical students. • Comprehensive children’s hospice models. Soweto Hospice has a children’s inpatient unit with medical supervision; Mapetla Day Care Centre is in the community in an old school building, reaching 100 children; and an extensive home care programme with professional nurses, social workers and community caregivers providing the care. • Hospital-based paediatric palliative care services. One example of a hospital- based service is that provided by the Bigshoes Foundation. Bigshoes staff then refer children to local hospice services for continuity of care, or have their own staff carry out the follow-up service. • Palliative care services for children in partnership with a hospital. In these instances the hospital provides the premises, medications and certain supportive services, and the hospice provides the palliative care service both within the hospital grounds and also into the community. Grahamstown Hospice has established a children’s inpatient unit in a ward in Settlers Hospital; while Sunflower House is on the grounds of a district hospital. • Integrated care. In this model, palliative care is integrated into a more comprehensive service for children. Butterfly House was opened in 2009 by Drakenstein Palliative Hospice, in a township named Fairyland just outside Paarl in the Cape Winelands region. The project includes palliative care to children as part of a variety of programmes that uplift the community and promote development of young people. Other services include a football club, dance classes, and cook- ery training; whilst mothers and women receive training in crafts. These crafts enable parents to generate income and thus improve their families’ quality of life. Professional palliative care is integrated into their services and children needing palliative care play and learn together with children from deprived backgrounds, thus reducing stigmatisation [11]. • A Network model. At present the St. Nicholas Bana Pele Network is the only network programme specifically for children. However, HPCA has a project for sustainable palliative care through strategic partnerships, and these partnerships include organisations caring for both adults and children [12–13]. The objectives of a network are to strengthen care for children along a continuum of care, 3 Paediatric Palliative Care in South Africa 37

with each service providing their expertise, resources and special services according to the needs of each child. St. Nicholas Bana Pele also has strong links to government departments and facilities, and the Free State University for the development of an education and resource centre.

There is no perfect model that will suit every circumstance. Some models, especially those with children’s inpatient units, are more expensive to run than others [14]. Models often reﬂect the vision of the founder, but many founders express surprise at the way their programmes change and develop to meet community needs. Basic components of a comprehensive model programme appear to include:

• Clear vision and mission • A multi-professional team trained in children’s palliative care, including a physician with knowledge of children’s palliative care • Access to essential palliative care medicines • Links to the formal health care system including hospitals and primary health care clinics • Networking relationships with other organisations caring for children • Home-based care focused on keeping children at home with support to the family • Psycho-social services including bereavement support, child protection, and family support • Understanding of the legal framework for children • Identiﬁcation of ethical issues and a system to address these (hospices are encouraged to have an Ethics Committee; HPCA has Bio-ethics and Research Ethics Committees) • Donor support from both formal donors and community donors • Willingness to adapt to changing needs and circumstances

3.7 Lessons That Can Be Learned From the South African Experience

As a result of strategic planning for development of children’s palliative care, South Africa now has a network of services providing palliative care for children throughout the country in each of the nine provinces. However, this is still not enough and HPCA is continuing with its development programme, with training courses planned in each region in 2011. More training will be done for formal health facilities to strengthen existing health care systems. National Associations have a critical role to play as the willingness of HPCA to establish a paediatric portfolio was key to the development of PPC across the country. Donors are very important and not only to provide funding. Donors often have a wider view through their interactions with organisations in different countries, and other donors, therefore can provide valuable advice and support. 38 J. Marston et al.

Table 3.1 ACT categories used to identify children requiring palliative care

Category Description

1 Children with life-threatening conditions that are potentially curable but treatment may fail 2 Children with chronic conditions requiring intensive long-term treatment aimed at maintaining quality of life 3 Children with progressive conditions for which treatment is exclusively palliative from diagnosis 4 Children with severe, non-progressive disabilities that can cause extreme vulnerability and health complications 5 Children requiring bereavement supporta 6 Neonates with life-threatening conditionsa aCategories added by HPCA

Education and training is the foundation for the provision of children’s palliative care. Advocacy should be linked to raising awareness in the general public. Advocacy can be difﬁcult and frustrating, as results often take time to be seen, but perseverance is important. Governments should be held accountable for the provision of palliative care for children and adults. Palliative care for children is a human right and the South African Patient Rights Charter includes palliative care as a right [15]. It is important to include children with all types of life-limiting and life- threatening conditions in PPC. Children with HIV infection are so numerous that organisations feel they do not have the resources to take on children with other conditions. In South Africa the categories identiﬁed by ACT, a children’s palliative care organisation in the United Kingdom, were adopted and two more categories added. The categories used to identify children requiring palliative care are summarized in Table 3.1. Health care workers require support. Working with children who are ill and dying is emotionally stressful and staff and volunteers require a support system. Quality is important and children deserve the best possible quality of care to help them achieve the best possible quality of life.

3.8 Conclusion

Every child matters. Children with life-limiting and life-threatening conditions are extremely vulnerable and often unheard and unseen. Individual programmes provide excellent care and make a real difference in the lives of the children they reach. However, this is not enough. To protect the rights of the life-limited child to relief of suffering and the best possible quality of life requires vision, strategy, and commitment from organisations and individuals. South Africa has shown that a great deal can be achieved in a short period of time if these are in place. 3 Paediatric Palliative Care in South Africa 39

References

1. Diana Princess of Wales Memorial Fund (2010) The status of paediatric palliative care in sub-Saharan Africa- an appraisal. http://www.theworkcontinues.org/downloaddoc.asp?id= 182. Accessed 2011 2. United Nations (2010) UNAIDS report on the global AIDS epidemic. http://www.unaids.org/ documents/20101123_GlobalReport_Foreword_em.pdf. Accessed 2011 3. Children’s Rights Centre (2011) Fact sheet on children in South Africa. http://www. childrensrightscentre.co.za/pages/20687. Accessed 2011 4. Kibel M, Lake L, Pendlebury S, Smith C (eds) South African child gauge 2009/2010. University of Cape Town & Children’s Institute, Cape Town 5. Cotlands (2011) www.cotlands.org.za. Accessed 2011 6. Amery J (ed) (2009) Children’s palliative care in Africa. Oxford University Press, Oxford 7. Hospice Palliative Care Association of South Africa (2010) Quarterly newsletter of the Hospice and Palliative Care Association of South Africa. http://www.hospicepalliativecaresa. co.za/pdf/newsletters/HPCA_Newsletter_August_2010.pdf. Accessed 2011 8. Harding R, Albertyn R, Sher L (2010) The status of paediatric palliative care in sub-Saharan Africa. An appraisal. Kings College, London 9. Selman L, Harding R, Agupio G et al (2010) Spiritual care recommendations for people receiving palliative care in sub-Saharan Africa. With special reference to Uganda and South Africa. Kings College, London 10. World Health Organization (2010) WHO definition of palliative care. WHO website http:// www.who.int/cancer/palliativecare/definition/en. Accessed 2011 11. Drakenstein Palliative Hospice (2011) Programmes. www.butterflyhouse.org.za. Accessed 2011 12. St. Nicholas Bana Pele Network (2011) www.banapelenetwork.co.za. Accessed 2011 13. Hospice Palliative Care Association of South Africa (2011) www.hospicepalliativecaresa.co. za. Accessed 2011 14. Perkins R, Henning K (2010) Unit costing in palliative care. Hospice and Palliative Care Association of South Africa 15. South African National Department of Health (2011) The patients’ rights charter. http://www. doh.gov.za/search/index.html. Accessed 2011 Chapter 4 Paediatric Palliative Care in Uganda

Julia Downing, Jane Nakawesi, and Rose Kiwanuka

Abstract Healthcare in Uganda is provided through a range of organisations working together to try and provide a comprehensive range of services, including both governmental and non-governmental organisations. However there is a shortage of healthcare workers and the health infrastructure is lacking and many resources are devoted to persons with HIV/AIDS. As a result of the rising incidence of HIV/AIDS and other life-limiting illnesses in the 1980s, many Ugandans began to recognize the importance of palliative care. Policymakers, healthcare organizations, and advocacy groups have developed palliative care programs and national strategies to advance palliative care. In regard to paediatric palliative care, the high infant mortality and cancer rates clearly indicate a demand for services. Given limited resources, provision of paediatric palliative care has been accomplished through a variety of models such as hospitals, hospices, home based programs, and outreach programs. Ugandan programs emphasize family-centered care and nurses provide the majority of the care. Advancement of paediatric palliative care faces several challenges including availability of morphine, awareness, lack of trained professionals, and lack of ﬁnances. Despite these challenges programs like Mildmay Uganda have provided comprehensive treatment for children with life-limiting illnesses since 1998. Mildmay is also an important center for training and mentorship in paediatric palliative care in Uganda.

Keywords Uganda · Africa · Cancer · Case studies · Children · End-of-life · Health care · HIV and AIDS · Hospice Africa Uganda · Medication · Mildmay · Palliative care · Palliative Care Association of Uganda (PCAU) · Policy · Provision of care

4.1 Uganda

Uganda is in East Africa and lies on the equator. It covers an area of approximately 242,000 square kilometres [46], has a population of 31.6 million [54] and lies between the eastern and western ridges of the Great Rift Valley. On the east it is bordered by Kenya, to the north is Sudan, to the west is the Democratic Republic

J. Downing (B) International Children’s Palliative Care Network and Makerere University, Kampala, Uganda e-mail: [email protected]

C. Knapp et al. (eds.), Pediatric Palliative Care: Global Perspectives, 41 DOI 10.1007/978-94-007-2570-6_4, C Springer Science+Business Media B.V. 2012 42 J. Downing et al.

Fig. 4.1 Map of Africa showing the location of Uganda

of Congo and to the south is Rwanda and Tanzania (Fig. 4.1). Whilst being a landlocked country, at least 20% of the country is covered in water by the Great Lakes including Lakes Victoria (the second largest freshwater lake in the world), Edward and Albert [46]. The River Nile winds its way through Uganda into Sudan and Egypt to the Mediterranean Sea. To the west of the country is the Rwenzori Mountains, with the third highest peak in Africa, to the east is Mt Elgon and to the south is Lake Victoria. The formation of Uganda as a country brought together many different tribes and cultures, each with their own traditional land, customs and a way of life learnt from their ancestors. There are therefore approximately 56 different tribes in Uganda speaking at least 33 different local languages, although these are classiﬁed into three major language groups: the Bantu, Nilotic Hamitic and Sudanic. The ofﬁ- cial language in Uganda is English, although it is the second or third language of most Ugandans and only those who have been to school will speak it. Kampala, the capital of Uganda, is home to the Baganda tribe and so Luganda is the vernacular most used in the area (Fig. 4.2); however, as a capital city, people are drawn from all over the country and region, so many languages can be heard. If a local language comes from a particular language group (e.g. Bantu), then many Ugandans can understand other local languages from that language group, even if they cannot speak it themselves. Uganda’s people are known for their friendliness and are polite, courteous and unhurried [46]. The majority of Ugandans live in the south and west of the 4 Paediatric Palliative Care in Uganda 43

Fig. 4.2 Map of Uganda

country and in the rural setting, with at least 60% of people earning a living through agriculture. The population growth rate in the country is one of the highest in the world standing at 3.3% and the average number of children per woman is 6.7 [50]. Uganda was one of the ﬁrst countries to recognize the challenges of HIV and AIDS and whilst life expectancy fell for many years, reaching a low of only 45 years, it has now risen again and in 2010 stood at 55 years [49]. However, the impact of HIV and AIDS is still widely felt in the country with 50% of the population being under 15 years of age (Fig. 4.3). Uganda became independent from Britain on October 9, 1962 with the current President Yoweri Museveni and his party, the National Resistance Movement, coming to power in 1986. It was a country worn out and in a desperate situation following years of unrest. However, slowly peace and stability began to return to most of Uganda. The country however is not yet fully at peace. The Lord’s Resistance Army (LRA) was formed in the north of the country following Museveni’s rise to power, and there has been civil war in the north of the country for many years. It is hoped that a peace treaty will soon be signed with the LRA, whose activities have reduced in the past few years. Thus whilst economic growth and stability has found its way to the south and west of the country [39], this is not the case for the north. Whilst Uganda is trying to develop and maintain its economic growth and stability, it is surrounded by countries that have themselves had periods of unrest, such as Sudan, the Democratic Republic of Congo, Rwanda and more recently Kenya, which poses a threat to the overall stability of the region. 44 J. Downing et al.

Fig. 4.3 Population of Uganda, by Gender

4.2 Health Care in Uganda

It is against this political context in which the health care system in Uganda must be considered. Instability and unrest over the years has a devastating effect on countries and the impact of unrest on health must be seen in the wider context and not just as casualties from direct ﬁghting. The negative public health impact has far wider implications. For example, countries affected by unrest have some of the highest infant mortality rates [10]. In 2008, Uganda had an under ﬁve mortality rate of 135 per 1,000 live births (Table 4.1). Whilst most of the country has been at peace for over 20 years now, the effects of the unrest can still be felt, particularly in the north where many of the population have been living in Internally Displaced Persons camps. The health system in Uganda developed out of the colonial period and is deeply rooted in western tradition. In the 1960s and early 1970s Uganda had a health system to be proud of. Mulago Hospital, the National Referral Hospital, was second to none in the region and in conjunction with Makerere University trained most of the doctors for the region [44]. However, the effect of years of unrest and destruction meant that in the 1980s the new National Resistance Movement government had the task of trying to rebuild and develop the health infrastructure in the country [52]. It was not only the physical infrastructure that was depleted but also the human 4 Paediatric Palliative Care in Uganda 45

Table 4.1 Demographic and socioeconomic data of Uganda

Date Estimate

Total population (millions)a 2008 31.657 M Population in urban areas (%)a 2008 13% Life expectancy at birth (years) 2008 52 Gross national income per capita (US$)b 2008 $420 Gross domestic product per capitac 2009 500 % of population living on <$1.25 per dayb 1992–2007 52% Per capita expenditure on health (US$)a 2007 $210 Median agea 2008 15 Under 5 mortality rate (per 1,000 live births)a 2008 135 Human development indexc 2009 Medium aWHO [54] bUNICEF [48] cUNAIDS [47] resources. Whilst the ‘brain drain’ continues to be a problem in Uganda with health care professionals seeking better opportunities abroad, during the 1970s and 1980s half of the doctors and 80% of the pharmacists had abandoned their country in search of more rewarding localities. Health care in Uganda is accessed by a small percentage of the population. The demand for health care has increased with HIV infections, and although some Districts have boosted the number of health centres in each sub-county, the quality of service rendered is still lacking and falls short of the health care required. The current system cannot handle the great demand on it. In his address to the U.S. Senate, Jonathan Mermin reports that Uganda’s health infrastructure is worse now than 30 years ago with most hospitals lacking x-ray machines, basic laboratory testing, or reliable supplies of simple medicine [27]. Between 1998 and 2007 only 2% of central government expenditure was allocated to health per year [48]. The current health system is based on a decentralised system with each District having a system of health centres and hospitals. Levels of care are provided at different levels within the Districts (Table 4.2), including Health Centres II, Health Centres III, Health Centres IV and then District Hospitals. Each District is supposed to have facilities at each level with there being more Health Centres II and one or two District Hospitals. Health care is provided by different organisations working together in order to try and provide a comprehensive range of services, including governmental facilities, those run by the church and missionary organisations, non- governmental organisations (NGOs) and private facilities. It is intended that each district should have a hospital and then each region of the country should have a regional referral hospital feeding into the National Referral and Teaching Hospital in Kampala – Mulago Hospital. Over the past 10 years the number of Districts in Uganda has expanded with new ones being formed, some of which are not yet at the level of having hospitals or even Health Centre IVs but a programme of upgrading facilities is in place. 46 J. Downing et al.

Table 4.2 Deﬁnitions of different levels of health facility in Uganda [34]

Hospitals District/rural hospitals These are manned by general doctors and are found at the District level Regional referral hospitals These have specialists in limited ﬁelds. They are teaching hospitals and resource centres for the region in which they are situated National referral hospitals Mulago and Butabika in Kampala

Health centres Health Centre Grade II (HC II) ⇒ Serves a parish ⇒ Provides outpatient care, antenatal care, immunisation and outreach ⇒ Manned by an enrolled nurse, an enrolled midwife and nursing assistant Health Centre Grade III (HC III) ⇒ Serves a sub-county ⇒ Provides all services of a HC II plus inpatient care and environmental health ⇒ Manned by one clinical officer, one enrolled nurse, two enrolled midwives, a nursing assistant, a laboratory assistant and a records officer Health Centre Grade IV (HC IV) ⇒ Serves a health sub-district ⇒ Provides all services of a HC III plus surgery ⇒ Supervises the lower level health centres, collects and analyses data on health and plans for the health sub-district ⇒ Has at least two clinical officers, one registered midwife, one enrolled nurse, one enrolled midwife, two nursing assistants, one laboratory technician, one laboratory assistant, one health inspector, one public health dental assistant, one anaesthetic officer, one assistant health educator, one records officer, one accounts assistant and two support staff

At the District level health services are co-ordinated by the District Director of Health Services (DDHS) working together with the Chief Administrating Officer and other District Officials. All work with regards to health in the District has to go through the DDHS’s office regardless of whether it will take place in a government or non-government facility. Health funding has also been decentralised and the DDHS holds the district budget – they are therefore the ‘key holders’ to health care in the District and are important stakeholders to work with. Despite efforts to develop the health system, Uganda still has a poor health structure with poor health indicators and a heavy burden of disease [31]. Whilst the urban areas are well serviced with health facilities, it is a different story in the rural setting. Only 60% of Ugandans live within 5 km of a health facility that provides the minimum care package. With the majority of Uganda’s population living in rural communities, accessibility of care is an additional problem. There are approximately 1.2 doctors per 10,000 people in Uganda and 13.1 nurses and midwives [55], and the ratio of doctors to people being even less in the rural areas as retention of doctors 4 Paediatric Palliative Care in Uganda 47 in the rural setting is hard. Recruitment in general is difficult and not all approved posts for health care professionals are filled by trained workers [31]. In a health facilities survey carried out in 2003, a nationally representative sample of 238 health facilities was selected from the 2000 inventory of health institutions in Uganda. Whilst the survey was mainly focusing on the availability of services for people with HIV/AIDS it looked at the general infrastructure of the health facilities and found that over 80% of health facilities had no electricity, 33% had no water and just under 10% had no toilet facilities. Whilst work has been undertaken since then to improve the situation, there is still a way to go with regards to developing the health infrastructure within the country. Large ‘stock-out’ rates of essential drugs provided by the government were also seen to impact on the range of health services that can be provided and many health professionals were providing care for which they had not been trained [32]. As well as the political turmoil faced by Uganda in the past, it was also one of the first countries to recognise and acknowledge the problem of HIV and AIDS. The first cases were identified in Rakai in 1982 [15, 38, 52], and this has had a major impact on health care in Uganda over the past 10–20 years. Uganda is often seen as an example of how countries can tackle HIV and AIDS through strong government leadership, partnerships and public health campaigns contributing to a reduction in the number of people living with HIV and AIDS. However, there have been, and continue to be devastating consequences on the country at the personal, social and economic levels [6]. Funds, such as the ‘President’s Emergency Plan for AIDS Relief ’ (PEPFAR) have contributed greatly, not only to providing care for people with HIV and AIDS, but also to capacity building and systems strengthening within the Ugandan Health Service as a whole. Since 2004 Uganda has received $1,216 million from PEPFAR to support comprehensive HIV and AIDS prevention, treatment and care programmes, with 207,900 individuals receiving antiretroviral therapy and 845,300 people receiving care and support during fiscal year 2010 alone [42]. In 2008 it was reported that Uganda spent 296,650 million dollars on HIV and AIDS care. Out of this, 13% was domestic public money, with 83% coming from Bilaterals such as PEPFAR, 0.8% from the Global Fund for AIDS, TB and Malaria and 3.2% from the United Nations [47].

4.3 Palliative Care Related Policy in Uganda

Accessibility to palliative care in Uganda has increased both in the public and the private sector since the first services started in 1993. The Ministry of Health has also played a key role in enabling a conducive environment for the development of palliative care and by the inclusion of palliative care into the National Health Sector Strategic Plan 2000/01–2004/05 [29] and the HIV and AIDS strategy, policies, and guidelines [30]. Government policy and accessibility to essential medications are part of the cornerstones to palliative care development as described in the public health model for palliative care [45]. In order for palliative care to be incorporated 48 J. Downing et al. within the health system, it must be included in national policies and guidelines and, following that, into the national health budgets. Thus Uganda made a big step forward once palliative care was included in the National Health Sector Strategic Plan (HSSP) and for the first time, palliative care was put into the package of essential clinical services to be delivered in government institutions. In the HSSP II, 2006–2011 palliative care was again included stating that all Hospitals and Health Centre IV’s should be providing palliative care and that adequate stocks of appropriate medication and supplies for palliative care should be available [33]. The policy document also goes on to discuss issues of capacity building, collaboration and strengthening partnerships and strengthening referral systems and linkages for palliative care [24]. Access to medications for palliative care is essential and work was underway from as early as 1998 to try and amend the section in the National Drug Policy and Authority Statute 1993 that only allowed registered medical practitioners, dentists and veterinary surgeons to prescribe morphine. It was recognized early on that due to the ratio of doctors to patients, it would be necessary to train nurses and clinical officers in palliative care to prescribe morphine so that more people, particularly in the rural areas, could have access to pain medication. The relevant statute was amended in 2004 that allows specialized palliative care nurses and clinical officers to prescribe oral morphine. This has enabled access to morphine to be scaled up across the country and in an audit undertaken by the Palliative Care Association of Uganda (PCAU) in 2009, they found that oral morphine was now available in 32 out of the 80 districts (i.e., 38% of districts in Uganda); however, not all districts are able to access it on a regular basis [41]. National leadership for palliative care has played an important part in the progress in Uganda. A Country Palliative Care Team, chaired by the Ministry of Health was initiated in 2001, in order to oversee countrywide palliative care and ensure that policy, personnel and essential medications are available wherever they are needed and to take a lead on the establishment of guidelines and standards within the national health policy [24]. The Ministry of Health also recognises the leadership and technical expertise of the Palliative Care Association of Uganda along with the palliative care organisations, such as Hospice Africa Uganda (HAU), Mildmay Uganda, and Kitovu Home Care Team, amongst others [41]. Academic leadership is now also being seen through the Makerere University/ Mulago Hospital Palliative Care Unit, thus paving the way for more research and service development. There are no specific national policies or guidelines for children’s palliative care, although children are included within the HSSP and for issues concerning medication. This absence of emphasis on children is in line with a recent review of children’s palliative care in sub-Saharan Africa (SSA) which found that the evidence base in Africa has not progressed for paediatric, as it has for adult palliative care. The review recommends that existing published palliative care protocols and evidence of the cost effectiveness of adult palliative care should be taken into account and more emphasis needs to be placed on palliative care for children within the region [20]. 4 Paediatric Palliative Care in Uganda 49

4.4 The Need for Palliative Care for Children in Uganda

Nearly all child deaths occur in developing countries and almost half of those in Africa [53] where 41% of the population is under the age of 15 years [40]. In Uganda the under ﬁve mortality rate is 135 per 1,000 births just under the average of 142 per 1,000 births in the African region [54]. Whilst perinatal conditions account for many child deaths in Uganda, other causes, such as malaria, tuberculosis, HIV, respiratory and diarrhoeal diseases cause similar numbers (Fig. 4.4)[54]. This poses the challenge for palliative care to be provided across both a range of settings and a range of diseases. By 2009 there was an estimated 22.5 million people living in SSA with HIV and AIDS, which accounts for up to 67% of the global burden of the disease. The problem is not restricted to adults; there were over 2.3 million children aged under 15 living with HIV in SSA in 2009, with 1.8 million new infections and 1.3 million deaths [47]. In Uganda there were 1.2 million people living with HIV and AIDS, with 20,000 new infections and 64,000 AIDS related deaths in 2009 alone. Out of those living with HIV and AIDS, 150,000 are under the age of 15, and there are around 1.2 million AIDS related orphans in Uganda. It is estimated that out of the 150,000 children living with HIV and AIDS, 76,000 of those need antiretroviral therapy (ART), but only 18% of those were receiving ART by December 2009 [47]. Cancer is also a major challenge in the region, with an estimated 551,200 new cancer cases and nearly 421,000 cancer-related deaths in SSA in 2008 [23]. In Uganda, there were an estimated 27,100 new cases of cancer in 2009 and 21,300 cancer related deaths. The ﬁve most common cancers in Uganda are Kaposi sarcoma and cancers of the Cervix uteri, Breast, Non-Hodgkin Lymphoma and Prostate, and as can be seen, many of the cancers found in Uganda are related to infectious diseases.

Fig. 4.4 Causes of death amongst children in Uganda <5 years [54] 50 J. Downing et al.

Approximately 166,000 children are diagnosed with cancer annually with 84% of those being in the developing world and 90% of the 80,000 child deaths from cancer a year are also in the developing world. There are currently more cancer cases being reported in Uganda than 10 years ago, and it is anticipated that this rise will continue and that cancer rates will rise by 400% in Africa over the next 50 years [35], and many of those affected will be children. A lack of cancer registries and accurate cancer statistics in many countries across the region, including in Uganda, has made it hard to get the true picture, although this has much improved in the last few years, and the data available for cancers in children is even harder to ﬁnd. Estimates from the International Agency for Research on Cancer [23] suggest that of the 27,100 new cases of cancer in Uganda in 2008, 2,663 were in children along with 2,168 cancer related deaths. The main cancers seen in children in Uganda were Non-Hodgkin Lymphoma (usually Burkitts Lymphoma), Kaposi sarcoma, renal and leukaemia (Fig. 4.5). However, diagnosis and access to treatment remain a challenge for many, with an estimated 70–80% of cancer patients in Africa being diagnosed with late-stage disease [16], and for those for whom treatment is an option, access to curative treatment such as chemotherapy or radiotherapy is limited. Thus the need for effective diagnosis and treatment will increase. Whilst diseases in children, such as HIV and AIDS and cancer are important for the delivery of palliative care, it can be seen from the causes of death in children under 5 that there are many other illnesses from which children are dying from in Uganda, and it is important to make sure that palliative care is accessible to them as well as to those children with HIV/AIDS and cancer. Despite this, the focus of funding and therefore the attention of palliative care services within Uganda has been focused on children with HIV and AIDS and cancer. Whilst the humane and effective care of children needing palliative care within SSA is a public health priority [20], there is still a long way to go to provide it for all those children who need it in Uganda.

Fig. 4.5 Estimated incidence of cancer in children in Uganda [23] 4 Paediatric Palliative Care in Uganda 51

4.5 Settings and Provision of Care

Within Uganda, and more widely in SSA, models of children’s palliative care delivery have developed according to need, availability of resources, sustainability and cultural sensitivity [13]. In a survey of the status of paediatric palliative care in SSA, Harding et al. [20] found only ﬁve papers looking at palliative care for children in SSA, reporting on only two countries: Uganda [4] and South Africa [19, 22, 25, 51]. Thus, there is a dearth of literature available on models of children’s palliative care in Uganda and the region as a whole. However, in the rural setting most care providers will be caring for children and adults, with very few children speciﬁc services available. Therefore, there is much we can learn from the models of care used generally in palliative care, many of which incorporate caring for children. It is important that services for children are integrated into the services already being provided, and that training is given as needed so that health professionals feel comfortable in providing palliative care for children. In order to meet the challenge of providing palliative care in Uganda, a variety of models have been developed which include the following:

• Independent specialist palliative care services – These services are provided through independent palliative care NGO’s such as Hospice Africa Uganda, Mildmay Uganda, Jinja Hospice and Joy Hospice. Services are provided across the continuum of care, including specialist level care as well as providing support to government and other organisations providing care, and also providing specialist palliative care within the home. Both Hospice Africa Uganda and Mildmay Uganda provide specialist care for children. Mildmay Uganda provides inpatient, day care and outpatient services with limited home care support. Inpatient care is provided as a last resort when it is not possible to manage the palliative care needs of the children at home. Hospice provides day care, outpatient services and home care. Many of the children that are cared for through Hospice Africa Uganda have cancer, whereas the majority of those at Mildmay Uganda will be HIV positive. Both Kitovu and Joy Hospice see children, although they make up a small percentage of their case load. • Hospital-based palliative care teams – These teams provide specialist services within the hospital context, and can be found in an increasing number of hospitals in Uganda. There is a palliative care team at Mulago Hospital – the national referral hospital in Kampala, linked with Makerere University. This team provides a consultation service throughout the hospital, including within the paediatric wards. They also work closely with Hospice Africa Uganda who has a specialist children’s palliative care team that supports the children in the cancer unit. Many of the children seen by the palliative care team at Mulago, will have many illnesses other than cancer, such as HIV, renal failure, malaria etc. The Palliative Care Association of Uganda is working with some of the regional hospitals to develop palliative care teams within the hospitals to care for both adults and children. 52 J. Downing et al.

• Home-based care – Much of palliative care provision in Uganda is done in the home. It is sometimes provided through specialist palliative care teams that visit patients and support them in the home, or else it is provided through home based care services provided by community volunteers and supervised by nurses or other health care professionals. Such services are available for children as well as for adults. • Outreach services – Some palliative care providers, such as Hospice Africa Uganda, have outreach services where they may go and support other organisations to provide palliative care, or provide road-side and mobile clinics. Other organisations provide access to essential medications which may be prescribed locally, but are not available, hence necessitating family members travelling to other places to get the medication. These services help to increase accessibility to palliative care service provision for those in rural and difﬁcult to reach communities. • Integrated services – In order to make palliative care for children accessible to those that need it in Uganda, services must be integrated into already existing structures, for example existing HIV and AIDS programmes, tuberculosis programmes, and programmes for disabled children. Examples of such programmes can be seen in different districts of Uganda.

One of the underlying philosophies behind the provision of palliative care in Uganda is that of family based care. In a country where so many families are affected by HIV and AIDS, care is often being provided to more than one member of the family at a time, for example to a parent as well as to a child. It is therefore important to ensure that any models of care for providing care for children, do so within the context of family centered care, such that all members of the family can be seen at the same time and in the same place, thus reducing burden and expense for the family. There is no one model of children’s palliative care service provision that is appropriate for each setting. When starting new services in Uganda, a needs analysis is undertaken, and the appropriate model of care is reviewed and adapted. Regardless of the model of care delivery being used, there are core elements that are provided within the context of children’s palliative care. Whilst the method of providing these services may vary, the principles behind them will remain the same. Communication forms the backbone of any palliative care service, and communicating with children is no exception. However, not only do health workers need to communicate effectively with children of differing ages and abilities, they also need to be able to communicate with their siblings, parents, carers and other health workers. Breaking bad news and supporting family members through the death of a child, can be particularly difﬁcult for many people. Good assessment is key to good management, and the assessment and management of symptoms, regardless of whether they are physical, psychological, or spiritual symptoms is important in planning care. Malnutrition is still a big problem in Uganda, hence advice on feeding and nutrition is integral to the care given, along with interventions when 4 Paediatric Palliative Care in Uganda 53 necessary. Caring for the family, and supporting the community in which the child lives, can make a big difference to the quality of life of the child, and is particularly challenging when more than one person in the family needs palliative care. Over the past 10 years, more and more children with HIV and AIDS are surviving into adolescence and beyond, thus palliative care services aimed at adolescents in Uganda need to be initiated and developed to try and meet the complex needs of this group. Likewise, many children in Uganda who die before their ﬁrst birthday are not seen by the palliative care team, and so this is an area of palliative care that could be strengthened.

4.6 Barriers to Providing Palliative Care for Children

There continues to be challenges and barriers to providing palliative care to children in Uganda and whilst only 18% of children who need ART can access it, the number of children who need palliative care and are able to access it is thought to be much less. One of the key challenges is an ongoing lack of knowledge about palliative care, and in particular palliative care for children, amongst health workers and managers. In the audit conducted by PCAU in 2009, they found that there was a lack of awareness with regards to palliative care from the District ofﬁcials responsible for health care in their districts, and they did not have a common understanding of what palliative care is or why it is needed, either for adults or for children [41]. There remains a lack of availability of medications for pain and symptom control. In 2009, oral morphine was only available in 38% of the districts in Uganda. Since then the number of districts in the country has increased with little concurrent increase in morphine availability. There have also been challenges in accessing morphine due to large scale stock outs, thus impacting accessibility and availability. Whilst oral morphine solution is ideal for use in children, there is a lack of paediatric formulations available for many drugs, thus limiting what can be used within children’s palliative care. Advocacy work to increase the availability of paediatric formulations of essential medicines is ongoing via the Palliative Care Association and Country team. Whilst health professionals, particularly in the rural areas, often work with both adults and children, many do not feel competent in providing palliative care to children. A survey of educational needs of health professionals working at Hospice Africa Uganda, found that health professionals wanted more training across the board in terms of children’s palliative care. Communicating with children was seen as the most pressing learning need, particularly in areas of ‘breaking bad news’ and ‘dealing with difﬁcult questions or strong emotions’. This was particularly the case in situations where there was a child headed household, or when the child had the traditional subservient role. Training on other, more technical, aspects of palliative care is also important, covering areas such as pain and symptom management, palliative care emergencies, end-of-life care and pharmacology [4]. 54 J. Downing et al.

There is a lack of specialist children’s palliative care professionals to deliver care and to train others. There is an ongoing programme of capacity development in children’s palliative care through an ongoing project funded by the Diana Princess of Wales Memorial Fund through Mildmay Uganda, through the children’s programmes at Hospice Africa Uganda and in the Bachelor of Science (BSc) in palliative care. However, there still remains a shortage of well trained and clinically experienced personnel to take the lead in developing children’s palliative care, and those that are there are expected to provide care, undertake advocacy and train, amongst other things [11]. Lack of resources and finances is a big challenge for many families in Uganda. This may result in delayed health seeking behaviour, thus children are brought for care once their disease is advanced and can no longer be controlled. It also impacts on the care and treatment provided. Whilst many attempts are being made to ensure that children can access treatments such as chemotherapy when they need it, a lack of resources may hinder them from travelling to the hospital for treatment. Most children will have to travel to Kampala for chemotherapy and radiotherapy treatments, thus necessitating a carer to come with them, which takes the carer away from earning a living and causes more financial hardship to the family. On occasions, where more than one member of the family may be sick and resources are limited, parents or carers have to make the difficult decision of which member of the family to spend the limited resources on. Whilst the challenges are many in providing children’s palliative care in Uganda, they are not insurmountable, and through ongoing advocacy, collaboration and education it should be possible to extend palliative care provision to more children in Uganda.

4.7 Providers of Care and Educational Opportunities

The philosophy of palliative care advocates for a team approach to care. Whilst the presence of a multi-disciplinary team is preferable, in reality children’s palliative care in Uganda is mostly provided by nurses, with support from clinical officers and doctors where available. There are few social workers in Uganda, although where they are available, for example at the specialist palliative care services such as Mildmay Uganda, Hospice Africa Uganda and Mulago Hospital, they have a crucial role to play. Throughout Uganda, nurses are in the best possible position to provide palliative care services, both to adults and children. They are found at all levels of the health care system and are more readily available, especially in the rural setting, than doctors and clinical officers. Likewise, the holistic focus of nursing on the psychological, social and spiritual as well as the physical well-being of the patients and families, provides nurses with an ideal framework from which to provide palliative care to children and their families [12]. Within Uganda, nurses have a varied role depending on their experience and training. Clinical duties such as assessment, 4 Paediatric Palliative Care in Uganda 55 pain and symptom management, treatment and prescribing as appropriate, play an important part of the care the nurses in Uganda provide to the children, alongside issues around communication, counseling, training, supervision, advocacy and health promotion [36]. Other members of the multi-disciplinary team that play a part in the provision of children’s palliative care in Uganda include the religious leaders, teachers, community volunteers and where appropriate, the traditional healers. Short courses on children’s palliative care have been available from Mildmay Uganda for several years. These courses have since been supplemented through the development of a Beacon Centre at Mildmay Uganda and the piloting of a 6 month training course on children’s palliative care through a three-country project funded by the Diana Princess of Wales Memorial Fund. This 6-month programme, which includes face-to-face teaching, clinical placement and distance learning, aims to improve the quality of life of Ugandan children with life-limiting illnesses and their families through improving knowledge, skills, attitudes and behaviours of health professionals [9]. The pilot of the programme, which is also run in Tanzania and South Africa, was completed at the end of December 2010, and it is anticipated that following revision, the programme will be scaled up further. The training is also linked to an advocacy strategy to integrate palliative care for children into national policies and undergraduate training. Clinicians from Uganda have also attended training and clinical placements in South Africa through the International Children’s Palliative Care Network (ICPCN) and funded by the Open Society Institute (OSI) [13]. Another key development in training for children’s palliative care in Uganda is the inclusion of a module on children’s palliative care in the recently validated BSc in palliative care. The BSc in palliative care is offered by Makerere University via its affiliated institution Hospice Africa Uganda in partnership with the African Palliative Care Association (APCA). The new course replaces the previous distance learning diploma, and students can leave the course with a Diploma after one year or complete the Degree after 3 years. Issues of children’s palliative care are integrated throughout the course during year one of the programme, however in year two there is a separate children’s palliative care module that students are required to pass in order to get the degree. This recognition of the importance of children’s palliative care is an important step forward in its development in Uganda. Over the past few years, PCAU have been working on standards of care for palliative care in Uganda, and are in the process of adopting and adapting the APCA Standards for providing quality palliative care across Africa [1]. Within the APCA Standards there are six standards that specifically address children’s palliative care: Holistic care provision in children; Pain and symptom management for children; Psychosocial care for children; End-of-life care in children; Bereavement care for children; and Ethical care, human rights and legal support for children [1]. Once these standards have been endorsed by the country team and Ministry of Health, they will represent a firm foundation for children’s palliative care service provision and development in Uganda. 56 J. Downing et al.

4.8 Research

There is a dearth of research on children’s palliative care in Uganda and indeed throughout SSA. One of the reasons behind this is a lack of locally relevant, validated tools to measure outcomes for children [20]. The APCA, whose headquarters are in Uganda, set out to develop a scale for measuring outcomes amongst children [14], which follows on from the development of the APCA African Palliative Outcome Scale [21, 43]. Several organisations in Uganda are helping with the pilot of the children’s outcome measure being developed including Hospice Africa Uganda, Mildmay Uganda, Kitovu Home Care Team and the Makerere University Palliative Care Unit. It is anticipated that this tool will be a useful tool for both clinical practice and research, and that its development will signal the start of research into different aspects of children’s palliative care in Uganda. Other research projects that have been undertaken in Uganda focus on specific children’s palliative care programmes. These have included a study looking at disclosure of HIV status and adherence to daily drug regimens among HIV-infected children at Mildmay Uganda [7], a study into the children’s palliative care educational needs of health professionals in Uganda [4], an evaluation of a children’s palliative care service in Uganda [5] and a situational analysis of children’s palliative care services at Mildmay Uganda [37]. There has been a lack of evidence for palliative care in SSA generally [17] and this was highlighted specifically for children’s palliative care [20]. Whilst the need for research is recognized, the challenges are many [18] and yet the desire to undertake further research into children’s palliative care exists in Uganda. However, there are limited resources and personnel available with the expertise needed, and these people are also trying to undertake clinical, managerial and teaching work. However, a research network for palliative care in Uganda has been established through the Makerere University Palliative Care Unit, and ideas for research into children’s palliative care identified. There are also potential collaborations being explored to help make some of the research identified a reality.

4.9 Highlight on Local Programmes

Mildmay Uganda is one of East Africa’s leading centres on HIV/AIDS care and treatment (Figs. 4.6 and 4.7). It was opened in September 1998 at the invitation of the Ugandan government and is an NGO working in partnership with the Uganda Ministry of Health. Since it opened, Mildmay Uganda has had a comprehensive programme for care and treatment, including palliative care, for children living with HIV and AIDS and their families. Access to care for children, including antiretroviral therapy is free. Care is provided through a family-centered approach, and alongside the care facilities, a residential training facility opened in September 1999 that trains more than 1,000 participants a year from Uganda and other countries in SSA on different aspects of HIV and AIDS related care and management. Training programmes range from 1 day to 6 months for health care providers at 4 Paediatric Palliative Care in Uganda 57

Fig. 4.6 Mildmay Uganda

Fig. 4.7 Mildmay Uganda doctors with the mother and the sick child on the ward 58 J. Downing et al. all levels, and they also run a BSc in a Health Systems Approach to HIV and AIDS Care and Management validated by the University of Manchester in the UK, and a Diploma in community HIV/AIDS care and management validated by Mbarara University of Science and Technology. They also have a strong programme for clinical placements, thus ensuring practical as well as theoretical learning [11, 37, 56]. Palliative care services provided by Mildmay Uganda for children include:

• Outpatient and inpatient services; • Pharmacy, laboratory, dental and radiology services. Simple x-rays and ultrasound scans can be done at the centre, but referral systems are in place for more complex radiological tests if needed; • Child-centered counseling including bereavement support; • Pastoral and spiritual support; • Social care, through a team of social workers, who have good links and referral systems with other local organisations; • Physiotherapy and occupational therapy, along with play therapy; • End-of-life care and support for the family; • Home based care – the team visits children in the community and at the home to provide services as appropriate; • Services for orphans and vulnerable children, e.g., supporting child headed households and educational support; • Services for adolescents through Kisakye Adolescent Centre.

On average, Mildmay Uganda sees around 2,500 children at any one time [37] and has built up many years of experience in providing palliative care for children, and conducting training programmes in this area. In a situational analysis undertaken in 2010 [37], staff working at Mildmay Uganda felt that they still needed more knowledge on pain assessment and management and on communication skills with children – both of these areas are common areas where individuals do not feel confident when providing palliative care for children and similar findings have been seen elsewhere [3–5]. Nutritional assessment and management was also a key area where staff requested more training, specifically with regards to the Integrated Management of Acute Malnutrition. Documentation was also an area that could be improved, and whilst they were using the National Policies for child protection and adolescent health as guidelines there were no specific Standard Operating Procedures for the centre itself [37]. The work of Mildmay Uganda is not limited to just one site, and whilst the main Mildmay facility is near Kampala, Mildmay Uganda is working with other NGOs and Government facilities in other parts of the country as satellite centres, e.g., Mukono Health Centre and St Francis Hospital Nagalama in Mukono district, Mityana Hospital and Kyantungo Health Centre IV in Mityana district, Buwama Health Centre III in Mpigi district, and Holy Cross Kikyusa and Bishop Asili Kasana in Luweero district, amongst others. Thus some children who do not live near Kampala are able to access care and services nearer their homes. 4 Paediatric Palliative Care in Uganda 59

Mildmay Uganda is being developed into a Beacon Centre to provide training and resources in children’s palliative care through a project funded by the Diana Princess of Wales Memorial Fund. Centres are also being developed in Tanzania and South Africa and Mildmay Uganda will train palliative care providers and network with other organisations as well as providing clinical placements and mentorship to smaller palliative care service providers wanting to develop children’s palliative care services. Hospice Africa Uganda (HAU) was established in 1993 [8] with the vision of facilitating the initiation and expansion of palliative care throughout Africa [28]. Clinical services have been provided through HAU since its inception, initially at its base in Kampala, and then through Mobile Hospice Mbarara, and Little Hospice Hoima [56]. Whilst HAU has been caring for children since its inception in 1993, it was not until 2006 when they decided to set up a focused children’s palliative care service and training programme. Palliative care is provided to children through the outpatient clinics at HAU in Kampala, home based care and to inpatients at the Cancer Centre at Mulago Hospital, the National Referral Hospital in Kampala [5]. The services provided for the children include:

• First-line chemotherapy for children with Burkitts lymphoma, and children are referred to HAU from across the country for chemotherapy; • Basic support in terms of food, clothing, transport costs, etc.; • Pain and symptom management; • A volunteer-led play and learning service; • Advocacy and child protection; • Patient information services.

Amery and his colleagues undertook an evaluation of the HAU service, and 30% of all staff felt that they needed more training on children’s palliative care, particularly in the areas of pain and symptom control and communication skills [5]. Identifying children in need of palliative care was also highlighted as a challenge, and this is often seen as one of the major barriers to providing children’s palliative care [26]. Child protection issues were also seen as factors that could undermine the provision of quality children’s palliative care, and the evaluation also showed the inﬂuence of demoralization and possible avoidance and burn-out amongst staff. It is therefore important that any children’s palliative care programme provides adequate supervision and support for those working in such a stressful area. Following an assessment into the educational needs of health professionals at HAU on children’s palliative care, a short training programme for children’s palliative care was developed and has been run through HAU. Alongside this, a textbook for children’s palliative care in Africa [2] was developed to provide resource material for people working in children’s palliative care. Whilst originating out of the work at HAU, the book prompted collaboration for people working in children’s palliative care from across SSA and it is hoped that it will be a resource for the region as a whole. 60 J. Downing et al.

Collaboration and networking is the key to providing children’s palliative care in Uganda. Unless organisations work together they will be unable to provide the care for children who need it. The story of AJ, (see Case Study 3) is an example of this, where different organisations were able to provide effective palliative care for AJ and his family by working together. Uganda is fortunate to have several children’s palliative care programmes in place, such as those described above. However, there is still a long way to go before all children in Uganda needing palliative care can access it. Both these programmes are based in or around Kampala, with satellite sites up-country, but they cannot reach all those children who need palliative care. There is therefore an ongoing need for capacity building and advocacy for children’s palliative care in Uganda. Children’s palliative care needs to be integrated into existing services, and only once palliative care for children is available in all districts in Uganda, will we begin to see accessibility and availability of palliative care for all children who need it in Uganda.

Case Study 1: KP KP was first brought to Mildmay Uganda by an uncle in December 2008. However, this uncle abandoned her at the centre and left without knowing about the subsequent care for her. He did not return. The story about her biological parents is unknown. She was admitted to the paediatric inpatient ward where she was found to be quite ill. Clinically she was miserable, severely wasted, had septic scalp sores and cervical lymphadenopathy. Her weight was 7 kg, height was 85 cm and weight for height was less than 60%. The systemic examination was essentially normal. A diagnosis of severe acute malnutrition was made and after investigations were done she was diagnosed with tuberculosis and HIV/AIDS. Tuberculosis (TB) treatment was commenced 2 weeks after her arrival at Mildmay Uganda. The social welfare department dealt with the social situation and the final solution was to find her an alternative home. This was done and after discharge from the ward she was taken up by Cherish, a home that takes care of HIV/AIDS orphans. She completed her TB treatment in August 2009. Her baseline CD4 count was 338 (16%) in January 2009. She was commenced on antiretroviral therapy in February 2009, initially on the regimen Zidovudine, Abacavir and Lamuvidine because she was on TB treatment. The Abacavir was replaced with Nevirapine on completion of the TB treatment. She also underwent nutritional rehabilitation with the therapeutic milk F75 and F100 and later plumpy nut and the new carer was taught how to make Kitobero. She has improved steadily and is now a happy little girl in her new home. Her current weight is 18 kg, the most recent CD4 count is 1122 (26%) as of September 2010 and she goes to school. Her carer also says the uncle often comes to visit her in the new home. 4 Paediatric Palliative Care in Uganda 61

Case Study 2: JP JP was referred to HAU from Mulagp radiotherapy department. He was an albino with cancer of the skin and was being cared for by his mother. His father had denied responsibility for him saying that he does not produce albino children and so he cannot possibly be his. He was receiving radiotherapy and whilst undertaking treatment he developed seizures. On referral to HAU his main problems were the wound on his forehead, severe headache, seizures, a lack of ﬁnances to enable his mother to bring him to the hospital, buy medication and food, along with the fact that he had been abandoned by his father. He was admitted to the palliative care programme where a full holistic assessment was undertaken. He was commenced on oral morphine and NSAIDS for his pain, and anti convulsants to try and control his seizures. He was visited at home on a regular basis and once his pain was controlled and he was feeling a bit better he was encouraged to attend the children’s day care programme at HAU. The team were also able to meet with the father and encouraged him to support JP and his mother at this difﬁcult time. Gradually the father’s attitude changed and he used to bring JP to day care every Tuesday at HAU. Thus the palliative care services had not only managed to control his pain, both physically and psychologically, but also socially, and had brought his family back together. HAU cared for JP and his family until he died.

Case Study 3: AJ AJ was a 16 year-old boy living in the North of Uganda in a camp for internally displaced people. He was very thin, his body was covered in sores and he was in a lot of pain. The local health care providers tried to help with his pain and to treat the sores on his body but only had access to paracetamol, and this was not enough to help him. A lady from a team that had gone to the camp from Kampala met AJ and contacted a health facility in Kampala who said that they would see him if he could get to Kampala. So the lady spoke with his family and brought him and his mother down to Kampala to get some help for him. He was seen in the clinic and after some tests was diagnosed with a type of lymphoma – Mycosis Fungoides. He was referred to HAU and his pain was brought under control using oral morphine. Meanwhile, the Palliative Care Association of Uganda, Mildmay, along with other organisations, were contacted to try and ﬁnd some chemotherapy so that he could be given some to try and control his disease. Through the organisations working together, AJ was given 2 cycles of chemotherapy which prevented his disease 62 J. Downing et al.

from progressing further, his pain was controlled and just before he died 3 weeks later he was smiling and enjoying having time with his mother, pain free, before he died.

References

1. African Palliative Care Association (2010) APCA standards for providing quality palliative care across Africa. APCA, Kampala, Uganda 2. Amery J (ed) (2009) Children’s palliative care in Africa. Oxford University Press, Oxford 3. Amery J, Lapwood S (2004) A study into the educational needs of children’s hospice doctors: a descriptive quantitative and qualitative survey. Palliat Med 18:727–733 4. Amery J, Rose CJ, Agupio G (2009a) A study into the children’s palliative care educational needs of health professionals in Uganda. J Palliat Med 13(2):147–153 5. Amery JM, Rose CJ, Holmes J, Nguyen A, Byarugaba C (2009b) The beginnings of children’s palliative care in Africa: evaluation of a children’s palliative care service in Africa. J Palliat Med 12(11):1015–1021 6. AVERT (2011) HIV and AIDS in Uganda. AVERT. www.avert.org/aids-uganda. Accessed Jan 2011 7. Bikaako-Kajura W, Luyirika E, Purcell DW, Downing J, Kaharuza F, Mermin J, Malamba S, Bunnell R (2006) Disclosure of HIV status and adherence to daily drug regimens among HIV-infected children in Uganda. AIDS Behav 10(Supp 1):85–93 8. Clark D, Wright M, Hunt J, Lynch T (2007) Hospice and palliative care development in Africa: a multi-method review of services and experiences. J Pain Symptom Manage 33(6):698–710 9. Diana Princess of Wales Memorial Fund (2009) Diana CPC Resource Centre Project Navigators Course: navigators’ manual. South Africa 10. Dodge CP (1990) Health implications of war in Uganda and Sudan. Soc Sci Med 31(6):691–8 11. Downing J (2006) Palliative care and education in Uganda. IJPN 12(8):358–361 12. Downing J, Finch L, Garanganga E, Kiwanuka R, McGilvary M, Pawinski R, Willis N (2006) Role of the nurse in resource-limited settings. In: Gwyther L, Merriman A, Mpanga Sebuyira L, Schietinger H (eds) A clinical guide to supportive and palliative care for HIV/AIDS in Sub-Saharan Africa. African Palliative Care Association, Kampala, Uganda, pp 345–356 13. Downing J, Marston J, Boucher S (2010a) Children’s palliative care in Africa. The Australian J Cancer Nurs 11(2):3–10 14. Downing J, Atieno M, Powell RA, Ali Z, Marston J, Meiring M, Ssengooba J, Williams S, Harding R, Mwangi-Powell FN and the APCA AIDSTAR Project Advisory Group (2010b) Initial results from the development of the APCA African Children’s Palliative Outcome Scale (APCA African Children’s POS). PaedPalLit Special Supplementary Edition July: 31 15. Garbus L, Marseille E (2003) Country AIDS policy analysis project: HIV/AIDS in Uganda. University of California, San Francisco, CA 16. Hamad HMA (2006) Cancer initiatives in Sudan. Ann Oncol 1 (Suppl.8):32–36 17. Harding R, Higginson IJ (2005) Palliative care in sub-Saharan Africa. The Lancet 465:1971– 1977 18. Harding R, Powell RA, Downing J, Connor SR, Mwangi-Powell F, Deﬁlippi K, Cameron S, Garanganga E, Kikule E, Alexander C (2008) Generating an African palliative care evidence base: the context, needs, challenges and strategies. J Pain Symptom Manage 36(3):304–309 4 Paediatric Palliative Care in Uganda 63

19. Harding R, Brits H, Penfold S (2009) Paediatric anti-retroviral therapy outcomes under HIV hospice care in South Africa. IJPN 15(3):142–145 20. Harding R, Sherr L, Albertyn R (2010a) The status of paediatric palliative care in sub-Saharan Africa – an appraisal. Kings College London/The Diana Princess of Wales Memorial Fund, London 21. Harding RA, Selma L, Agupio G, Dinat N, Downing J, Gwyther L, Mashao T, Mmoledi K, Moll T, Mpanga Sebuyira L, Panjatovic B, Higginson I (2010b) Validation of a core outcome measure for palliative care in Africa: The APCA African palliative outcome scale. Health Qual Life Outcomes 8:10 22. Henley LD (2002) End of life care in HIV-infected children who died in hospital. Dev World Bioeth 2(1):38–54 23. International Agency for Research on Cancer (IARC) (2008) GLOBOCAN 2008: cancer incidence and mortality worldwide in 2008: Fast Stats. http://globocan.iarc.fr. Accessed Jan 2011 24. Jaqwe J and Merriman A (2007) Uganda: delivering analgesia in rural Africa: opioid availability and nurse prescribing. J Pain Symptom Manage 33(5):547–551 25. Knapp C, Madden V, Marston J, Midson R, Murphy A, Shenkman E (2009) Innovative pediatric palliative care programs in four countries. J Palliative Care 25(2):132–136 26. Meiring M, Amery J (2009) Caring for children at the end of life. In: Amery J (ed) Children’s palliative care in Africa. Oxford University Press, Oxford, pp 327–347 27. Mermin J (2004) Address to the US Senate. www.allAfrica.com. Accessed 2011 28. Merriman A, Harding R (2010) Pain control in the African context: the Ugandan introduction of affordable morphine to relieve suffering at the end of life. Philos Ethics Humanit Med 5(10). http://www.peh-med.com/content/5/1/10 29. Ministry of Health (2000a) Health Sector Strategic Plan 2000/01–2004/05. Government of Uganda, Kampala 30. Ministry of Health (2000b) The national strategic framework for HIV/AIDS activities in Uganda: 2000/1–2005/6. Ministry of Health, Kampala 31. Ministry of Health (2003a) Uganda health facilities survey 2002: Key ﬁndings. Ministry of Health, Kampala 32. Ministry of Health (2003b) Statistical abstract (Working Paper). Ministry of Health, Kampala, p35 33. Ministry of Health (2006a) Health sector strategic plan 2006–2011. Government of Uganda, Kampala 34. Ministry of Health (2006b) Health infrastructure. Ministry of Health, Kampala 35. Morris K (2003) Cancer? In Africa? Lancet Oncol 4:5 36. Mwangi-Powell F, Ddungu H, Downing J, Kiyange K, Powell RA, Baguma A (2010) Palliative care in Africa. In: Ferell BC, Coyle N (eds) Oxford textbook of palliative nursing. Oxford University Press, London, pp 1319–1329 37. Nakawesi J, Kavuma D (2010) Situation analysis of paediatric palliative care services at Mildmay Uganda. March. Mildmay, Uganda. 38. Okware S, Opio A, Musunguzi J, Waibale P (2001) Fighting HIV/AIDS: is success possible? Bull WHO 79(12):1113–1120 39. Olwanzi SA (2004) Dying for economic growth? Evidence of a ﬂawed economic policy in Uganda. Lancet 364:1632–1637 40. Parkin DM, Sitas F, Chirenje M, Stein L, Abratt R, Wabinga H (2008) Part I: cancer in indigenous Africans – burden, distribution, and trends. Lancet Oncol 9(7):683–692 41. PCAU (2009) Audit report of palliative care services in Uganda. PCAU, Kampala 42. PEPFAR (2011) US Department of State. Partnership to Flight HIV/AIDS in Uganda. www. pepfar.gov/countries/uganda/index.htm. Accessed Jan 2011 43. Powell RA, Downing J, Harding R, Mwangi-Powell F, Connor S (2007) Development of the APCA African Palliative Outcome Scale. J Pain Symptom Manage 32(2):229–232 64 J. Downing et al.

44. Ssekamwa J, Lugumba S (2001) A history of education in East Africa. Fountain Press, Kampala 45. Stjernsward J, Foley KM, Ferris FD (2007) The public health strategy for palliative care. J Pain Symptom Manage 33(5):486–493 46. Tumusiime JR (2008) The best of Uganda at a glance. Tourguide Publications Ltd, Kampala, Uganda 47. UNAIDS (2010) UNAIDS Report on the Global AIDS epidemic. Geneva 48. UNICEF (2011) Unite for children: Uganda Statistics. www.unicef.org/infobycountry/ uganda_statistics. Accessed Jan 2011 49. United Nations (2009) The millennium goals development report 2009. United Nations, New York, NY 50. United States Census Bureau (2011) International database population pyramids. http://www. census.gov/ipc/www/idb/informationGateway.php. Accessed Jan 2011 51. Uys LR (2003) Aspects of the care of people with HIV/AIDS in South Africa. Public Health Nurs 20(4):271–280 52. Withell B (2000) A study of the experiences of women living with HIV/AIDS in Uganda. IJPN 6(5):234–244 53. World Health Organization (2003) Shaping the future. WHO, Geneva 54. World Health Organization (2010a) World health statistics 2010. WHO, Geneva 55. World Health Organization (2010b) Global health observatory: Uganda: health proﬁle. http:// www.who.int/gho/countries/uga.pdf. Accessed Jan 2011 56. Wright M, Clark D (2006) Hospice and palliative care in Africa: a review of developments and challenges. Oxford University Press, Oxford Chapter 5 Pediatric Palliative Care in Zimbabwe

Jenny Hunt and Eunice Garanganga

Abstract Economic adversity during the last decade has eroded earlier positive developments in pediatric palliative care in Zimbabwe. A dire shortage of skilled palliative care practitioners coupled with increasing demands on health services to manage the problems associated with a high prevalence of HIV/AIDS have resulted in the burden of care being carried mostly by the community and family, and a handful of organisations practising palliative care. Home based care organisations using volunteer community caregivers are increasingly expected to provide elements of palliative care, having received only basic training. The advent of anti retroviral therapy (ART) has signiﬁcantly extended quality and length of life for many and has special relevance for children living with HIV. However, for those who are unable to access this treatment, and for many who are on treatment, the need for pediatric palliative care remains important for the relief of suffering. Avoidance of talking to children about living with a life limiting illness continues and is perhaps exacerbated by a focus on living positively in the era of ART. Palliative care services for children struggle to provide the full range of holistic care citing problems of time, privacy and a limited multi disciplinary approach due to a shortage of relevant professionals and a lack of co-ordination. The potential for scaling up pediatric palliative care in Zimbabwe is enormous but will depend largely on human resource capacity.

Keywords Zimbabwe · Palliative care · Pediatric · Anti-retroviral therapy · Home based care · Levels of care · Skilled human resources · Families · Standards of care

5.1 Introduction

While researching the current status of pediatric palliative care in Zimbabwe for this chapter it became apparent that this is a story of great opportunities and unre- alised potential and that implementation of care has been, and continues to be, signiﬁcantly affected by the political and economic climate of the last decade in this country. In 2007 the International Monetary Fund (IMF) estimated the Gross

J. Hunt (B) Independent Palliative Care and Bereavement Consultant, Milton Park, Harare, Zimbabwe e-mail: [email protected]

C. Knapp et al. (eds.), Pediatric Palliative Care: Global Perspectives, 65 DOI 10.1007/978-94-007-2570-6_5, C Springer Science+Business Media B.V. 2012 66 J. Hunt and E. Garanganga

Domestic Product (GDP) of Zimbabwe to be USD 28 billion; this dropped significantly by 2010 to USD 3.5 billion. The year 2008 saw 80% of the population living below the poverty datum line and a 94% unemployment figure. In 2009 GDP growth was estimated at –5.7%, and in January 2009 the daily inflation rate was almost 100% [1]. Mass emigration during that time of skilled and specialist health workers including pediatricians, nurses, doctors, social workers and psychologists has resulted in the attrition of what had been a growing body of palliative care- trained health and care workers. Almost without exception, health workers who received palliative care training in the 1980s through to 2008 left the profession and the country for economic reasons. Before the Zimbabwe government adopted the USD as its national currency in early 2009, inflation had soared to 230 million %. Since 2009 a relative political stability and use of the USD as currency have enabled a re- thinking and re-structuring of programs. GDP growth had risen from –5.7% in 2009 to +5.9% by 2010 although the outlook for sustained growth in 2011 is uncertain due to various factors [2]. There have been renewed efforts to reinstate formal palliative care training of nurses in hospitals and a slow progress can be observed in conditions at health facilities, drug availability and training opportunities. Zimbabwe is therefore in the somewhat unique situation of currently providing a mere shadow of its former palliative care self in some respects, yet on the cusp of developing a new realm of innovative strategies with new partners and players in the field of palliation that are enhanced and shaped by the difficulties and experiences of the past decade. Concurrently, in order to address the overwhelming numbers of people living with HIV/AIDS in the country, there have been efforts to graft palliative care and orphan programs onto existing home based care (HBC) programs [3]. Anti retroviral therapy (ART) has had a remarkable impact on life expectancy and quality of life for people living with HIV/AIDS (PLWHA), including children. Better management of the disease is possible by controlling opportunistic infections and through good nutrition. However social, psychological, physical and other non-curative support needs remain significant in the long term and in the case of children living with HIV, supportive services become a life long necessity. Palliation may therefore be required over a longer period but may not be intensive and this has implications for budgets, implementation strategies and human resources. It is worth noting that the emphasis on living positively with ART tends to divert any urgency to discuss issues of living with a life threatening illness with children, enabling those hesitant to do so to avoid this aspect of the palliative care approach. All this points to a new era in palliative care in Zimbabwe and new opportunities for pediatric palliative care in particular. The recently introduced National Standards for Home Based Care in Zimbabwe [4] and Palliative Care Standards for Zimbabwe [5] provide guidance for care of the patient in the community and incorporate elements of palliative care that can be measured and monitored at the community level. The African Palliative Care Association (APCA) [6] released the first edition of Standards for Providing Quality Palliative Care Across Africa in 2010, recognising that palliative care can be developed or improved across the different service levels of primary, intermediary and tertiary care. Such standards are useful in achieving a unified understanding of 5 Pediatric Palliative Care in Zimbabwe 67 palliative care, ensuring that quality services are maintained and defining an absolute minimum of care that can be considered palliative. In both the national standards and the APCA document attention is paid throughout to the needs of children and specific requirements relating to children’s palliative care are included.

5.2 General Description of Zimbabwe

Zimbabwe is a landlocked country in Southern Africa covering an area of 390,580 square kilometres. Figure 5.1 illustrates how the country borders South Africa to the south, Mozambique to the east, Zambia to the north, and Botswana to the west. It is divided into 10 provinces and 62 districts for administrative purposes. Most provinces are primarily rural. The population in 2011 was estimated at 12,084,304 [2] with a demographic adult proﬁle of slightly more females than males. Over 70% of the population is women and children with 41% of the population children under the age of 15 years, many of whom are orphans. Older persons comprise 4% of the population [7]. Zimbabwe has the highest population growth rate in the world at 4.3%. Its death rate of 13.58/1000 is ranked 19th in the world [2].

Fig. 5.1 Map of Zimbabwe [6, 8] Source: http://english.freemap.jp/blankmap/ 68 J. Hunt and E. Garanganga

5.3 Child Mortality

Child mortality rate is often an indicator of the level of socioeconomic development of a country. In Zimbabwe the under five mortality rate rose from 77 per 1,000 live births in 1994 to 82 per 1,000 live births in 2005. Infant mortality has followed the same trend. The neonatal mortality rate decreased from 29 per 1,000 live births in 1999 to 24 per 1,000 live births in 2006 [9]. These levels of mortality are mainly attributed to the direct and indirect impact of the HIV/AIDS epidemic and the associated rise in poverty levels. Deaths due to nutritional deficiencies are significantly higher than any other cause and are testimony to the daily struggle for life for many children. Table 5.1 shows the causes of deaths in children between the ages of 1–4 years in 2007. Mortality indicators such as crude death rate, infant, child, and maternal mortality and life expectancy improved markedly in the years following independence in 1980, but since the early 1990s they have been static or have deteriorated [11]. The Zimbabwe Ministry of Health and Child Welfare (MOHCW) has over recent years adapted and adopted a number of high impact and low cost strategies aimed at reducing the unacceptably high rates of childhood deaths. One such intervention is the Integrated Management of Childhood Illnesses (IMCI) [12] which was adopted and institutionalized in 1999 in order to address child health problems and ensuring maximum development of the child. The HIV/AIDS burden has continued to increase globally, and Zimbabwe reflects this trend. Whilst adult HIV prevalence has declined from 24.6% in 2003 to 13.71% in 2009, Zimbabwe remains the fourth most HIV affected country in the world. Children under the age of 14 years constitute 7% of those living with HIV and AIDS, and 17% of AIDS related deaths. UNICEF estimates that 25% of all children were orphans in 2005 [11]. According to a MOHCW (2010) [13] report the prevalence rate in children in 2010 was 2.08% and an estimated 10–12% of infants in Zimbabwe were infected with HIV.

Table 5.1 Causes of mortality 1–4 years (2007) [10]

Rank Disease/condition Deaths

1 Nutritional deﬁciencies 258 2 Acute respiratory tract infections 140 3 Intestinal infections 123 4 Other viral diseases 37 5 Pulmonary TB 35 6 HIV related/AIDS 31 7 Malaria 28 8 Anaemias and blood forming organ disorders. 26 9 Oral cavity and digestive system 22 10 Endocrine and metabolic disease and immunity disease 21 5 Pediatric Palliative Care in Zimbabwe 69

5.4 The Health Care System

The health system is organised in a hierarchy of four levels of care as illustrated in Fig. 5.2. The primary level includes rural health centres and community based health workers. District hospitals constitute the secondary level of care. The tertiary level consists of provincial hospitals, and at the quaternary level are central hospitals. Central hospitals are situated in the two major cities: Harare and Bulawayo. The referral ﬂow is a two way system from the rural health centre to the district hospital, provincial hospital and where necessary central hospital. Theoretically, each level engages in promotional, preventive and curative activities with the higher levels providing support, supervision and referral facilities for levels below. In addition to the state owned health facilities are local government clinics, mission hospitals and private hospitals. At the primary health level Zimbabwe has developed an extensive community health system using home based care (HBC) organisations in collaboration with governmental and non-governmental organizations. Although this community response supports the health care system, full integration including supervision of the HBC organisations by MOHCW structures still require strengthening. Due to the burden of care demanded by HIV/AIDS which results in needing to reach chronically ill patients in their homes, community health support has become a vital part of the health system.

Level 4 CENTRAL HOSPITAL Radiotherapy, chemotherapy and major surgery. Morphine available.

Level 3 PROVINCIAL HOSPITAL Surgery and all other medical treatment

Level 2 DISTRICT HOSPITAL More complicated cases as second referral level from level 1

Level 1 (primary) CLINICS – Primary Rural Health Centres, municipal, church- based, privately run (eg. Mining companies). Community health workers. Predominantly rural although also in urban suburbs. Primary care and prevention, health education, treatment of simple ailments for both adults and children. Limited medications.

Fig. 5.2 Flow chart of the country’s health system levels of care 70 J. Hunt and E. Garanganga

5.5 Provision of Services and Settings of Care

5.5.1 Background

Palliative care for adults and children in Zimbabwe was initiated by Island Hospice and Bereavement Service (IHS) in 1979 as a HBC approach, using the skills of a multidisciplinary team of palliative care health workers such as nurses, social workers and a doctor to support families and communities caring for the dying at home. The service was initially provided for cancer patients and depended on the support and funds of families and well wishers in affected communities [14]. The HIV/AIDS pandemic in sub-Saharan Africa attracted the attention and ﬁnan- cial support of the international community enabling care to be extended to other community support groups offering HBC. Volunteers received basic training in palliative care from IHS and later Hospice Association of Zimbabwe (HOSPAZ) which was registered in 1999 to support and promote palliative care services in collaboration with the MOHCW and its member organisations working in the community. Services that are free or inexpensive have characterized the development of palliative care initiatives in Zimbabwe. Expansion of supportive care such as provision of food, visits from community caregivers and church members was imperative given the large numbers of patients dying in dire poverty, but concerns have been raised as to whether this constitutes pediatric palliative care as endorsed by the WHO [15]. The implementation of national standards should assist organisations in working towards quality palliative care. Strategies continue to evolve to cope with the overwhelming numbers of seriously ill in settings where health facilities are few and far between and are inadequate to provide succour for the terminally ill. There are some examples of innovative children’s palliative care such as Seke Rural Home Based Care and Mashambanzou Care Unit that have responded to the challenges of the HIV/AIDS epidemic and the particular cultural needs in the region. An anticipated assessment in the near future using the HOSPAZ national palliative care standards and APCA Standards will provide guidance on how such organisations can improve the palliative care service they provide to children. With demand for palliative care in general far outweighing supply, attention to pediatric palliative care has been minimal and services remain limited. A 10 year plan to have palliative care integrated as part of the Cancer Control Strategy was devised for the period 1994–2004 by the WHO in collaboration with the MOHCW and a group of health professionals and other interested stake holders, forming the Prevention and Control of Cancer Committee in Zimbabwe. One aim of the plan was to have palliative care trained health care personnel in each provincial hospital but the programme was not sustained and this impetus has been lost. The latest data on the need for palliative care in Zimbabwe was published in a 2004 WHO report [16]. The report indicated that one in 60 people suffering from HIV/AIDS and cancer required palliative care. No estimate was provided for pediatric palliative care. 5 Pediatric Palliative Care in Zimbabwe 71

5.5.2 Ministry of Health and Child Welfare (MOHCW)

The MOHCW has been sensitised to palliative care over the last three decades and has integrated aspects of pediatric palliative care in a few selected departments at the main hospital in Harare, Parirenyatwa Hospital. The ministry has committed to a limited palliative care training element in their programmes for medical and nursing students but pediatric palliative care is a neglected area. The recurrent problem of high staff turnover and depleted human resources means that it is difﬁcult to accu- mulate and retain a critical mass of trained health professionals in the mainstream health sector.

5.5.3 Parirenyatwa Hospital’s Ward A4 Special and KidzCan

The children’s oncology ward, or Ward A4 Special, at Parirenyatwa Hospital accommodates 24 children. Other wards receive children with diabetes, cardiology needs and renal complications. Referrals to Ward A4 Special are often late presentations of children who reside in rural areas and suffering from progressive and advanced cancers. Consequently children often stay in the hospital for protracted periods of time for treatments and stabilisation. Due to the late referrals, deaths do occur on the ward. Table 5.2 shows statistics from the National Cancer Registry in 2006 indicating the most common pediatric cancers [17]. Two nurses on the ward have received introductory training in palliative care from IHS and supervision from an experienced IHS nurse has been introduced at a limited level. A senior pediatrician is trained in palliative care but due to conﬂict- ing demands on his time because of severely over stretched human resources, he is unable to fully implement his skills and mentor others. All pediatricians and nurses on the ward identify palliative care training as a priority. KidzCan Zimbabwe, a faith-based organisation (FBO), has targeted this ward as their mission. Volunteers have renovated and equipped a play room which provides children with a welcome break from their hospital beds. They spend quality time with the children, talking and playing and providing invaluable companionship. The organisation obtains medications and supplies to supplement limited resources and have installed television sets in the ward. There is a growing liaison with the palliative care professionals at IHS and referrals and consultations between Ward A4 Special and the IHS team

Table 5.2 Most common pediatric cancers 2006 [17] Boys Girls Retinoblastoma Wilms tumour HIV related non Hodgkins Retinoblastoma lymphoma Wilms tumour HIV related Kaposis sarcoma HIV related Kaposis sarcoma Leukemia Leukemia Bone cancer 72 J. Hunt and E. Garanganga are aimed at providing continuity of care before, during and after a hospital stay. The potential to integrate pediatric palliative care into this setting is enormous, human resources permitting.

5.5.4 HOSPAZ

HOSPAZ is an umbrella organisation whose mission is to promote and support hospice and palliative care providers in Zimbabwe, through setting standards, capacity enhancement, advocacy and membership coordination. Over the past few years HOSPAZ has taken the lead in advocating for palliative care for children in Zimbabwe, through the development of a pediatric palliative care training manual for communities [18], training and supporting care providers. They have also promoted the integration of care and support for children within HBC programmes. HOSPAZ and its members implemented the integration of palliative care for children into community programmes under the National Activity Plan for Orphans and Vulnerable Children. Through the support of UNICEF, approximately 60 partners of HOSPAZ, most of which are HBC organisations, have received training in pediatric palliative care and ART adherence. Results have varied but some organisations have been able to successfully integrate aspects of pediatric palliative care into their work.

5.5.5 Mildmay

Harare Children’s Hospital was built with the support of Mildmay International in order to provide palliative care and other services for children. It was transferred to the MOHCW but due to resource constraints these services have not continued.

5.5.6 Island Hospice and Bereavement Service (IHS)

Referrals of children with life limiting illnesses to IHS are sporadic and fewer in number than may be expected from the prevalence of serious illness cited in the MOHCW statistics above (Table 5.1). New referrals in 2009 numbered 24 (16 boys and 8 girls). Table 5.3 illustrates the 2009 registered cases by gender. In that year there were 223 children receiving palliative care, some of whom had been in care since 2007. Pediatric cases referred to IHS in 2010 reached 34 (22 boys and 12 girls). A system of community pediatric clinics was established by IHS at the beginning of 2006 in order to reach many more children. Four models were designed to integrate care into hospitals, rural areas, community centres and municipal clinics in high density areas. Two of these models (hospitals and community centres) are described in this section. The New Dawn of Hope Centre in Mufakose is a well established community centre offering a variety of community services including 5 Pediatric Palliative Care in Zimbabwe 73

Table 5.3 IHS pediatric palliative care registered Number Percent cases (2009) Sex Female 116 52.0 Male 107 48.0 Total 223 100.0 Age Group Under 5 Years 58 26.0 5–9 Years 65 29.1 10–14 Years 61 27.4 15–17 Years 39 17.5 Total 223 100.0

basic health care advice and support. With donor funding it supplies basic analgesics, gloves and bleach for household HIV prevention and hygiene. IHS initially trained volunteers in counseling skills and basic components of palliative care and in October 2006 initiated a monthly clinic for children. The aim of this was to manage the symptoms of children identified by community volunteers as probably HIV positive, ill and in need of medical and/or psycho-social support. The project has attracted sporadic short term funding from donors but continues to operate as an IHS outreach program regardless of donor funding. Records show that all children attending are HIV positive and there are no children registered with cancer. The monthly clinic is operated by IHS clinical staff (a nurse, social worker and when possible a doctor) for approximately 3 h each session. During this time up to 40 school-going children, with or without carers are attended to by the relevant IHS staff member for medical or psychosocial support. Medications donated by the US-based Drug Relief International (DRI) and John Snow International make a significant difference to the ability of IHS to manage pain and symptoms adequately in this resource-poor area. Medications provided free of charge to children include Cotrimoxazole if the child is not yet taking anti-retroviral treatment (ART), paracetemol, antifungal creams, antacids and cough syrups. The local referral hospital prescribes and administers all ART in conjunction with Cotrimoxazole, and this monthly clinic performs an effective adherence monitoring function. The main presenting psychosocial issues are bereavement (often arising from parental loss), child abuse, blended families, poverty and neglect. While the value of such a service to this community cannot be underestimated, IHS nurses operating this clinic report dissatisfaction with the palliative care aspect of this clinic. They believe they are offering an enhanced version of an opportunistic infections clinic or children’s health service rather than pediatric palliative care. Although there is a multi-disciplinary team available and referrals to the social worker are made by the nurse or doctor as required, a comprehensive team approach as defined in the WHO definition [16] is compromised by lack of time, space and resources. The social worker believes that some improvements could be made to ensure there is time, privacy and the opportunity for the kind of conversations that 74 J. Hunt and E. Garanganga are needed to develop the in-depth relationships that characterise palliative care. Due to limited IHS human resources, patients requiring follow up care at home receive this from volunteers who have limited training and who struggle to initiate discussions relating to dying and death, especially with children. It has been noted in supervision and training sessions that with the advent of ART, in which mortality rates have slowed dramatically, caregivers focus on living positively and tend to avoid palliative care conversations of what it means to be living with a life-limiting illness. A similar clinic is held on a weekly basis at the government hospital in Chitungwiza, the second largest urban setting after Harare. There is one children’s ward at the hospital for surgical and medical procedures, while pediatric cancer cases are referred to the children’s oncology ward at Parirenyatwa Hospital in Harare. The IHS clinic at Chitungwiza provides a palliative care service to both adults and children with HIV and cancer although pediatric cancer cases are seldom seen and most children present with HIV-related problems. As in the above model, children are assessed for treatment management by the IHS nurse or doctor. A referral to a social worker is made as necessary, usually related to problems experienced due to stigma in the home. Stigma often results in neglect or abandonment and calls for mediation, family sessions or liaison with the Department of Social Welfare to assist with practical difficulties such as school fees and welfare assistance. With up to 40 children and their carers seen by the IHS nurse within the limited space and lack of privacy afforded them at the hospital, the process is again one of enquiry about the background of the family, relevant health matters, symptom management and referral to a social worker if necessary.

5.5.7 Pediatric Bereavement Support

IHS has provided a bereavement counseling service for all ages since its inception in 1979. A program of group work for bereaved children was developed in 1992 that continues and evolves to this day. Children from the age of 5 years to late teens who have received counseling on an individual or family basis are afforded the opportunity to attend a full day group session to meet other bereaved children and to share personal experiences of loss. The program was designed to create a safe place for expression of grief, to share similarities and acknowledge uniqueness, understand the grief process and to relax and have fun during the day. This concept has proved successful but builds upon a pre-existing counseling relationship and requires significant input from professional staff before, during and after the group. In response to depleted human resources and a growing need to offer support to children who cannot access counseling services regularly, a different model called Community Loss Work Groups has been initiated in some high density suburbs. Community social workers and volunteers have received 5 days of training in group facilitation from IHS to help them provide support for children during the five morning group sessions. The program used in these sessions is based upon the full day program but spread over five mornings. 5 Pediatric Palliative Care in Zimbabwe 75

A children’s support project was initiated in 2001 with several objectives, foremost of which was to increase the quality of physical and psychosocial care for bereaved children and children facing a life-threatening illness in the community, children’s homes and hospital wards in Harare. Young carers looking after an ill relative were identiﬁed as a particularly vulnerable group requiring input such as training in caring for the chronically ill, information on how to give medicines, nutrition, hygiene, and how to take care of themselves. Community based social workers have been targeted for training courses on palliative and bereavement care for children with an emphasis on group work.

5.5.8 Mashambanzou Care Trust

This interdenominational non-profit organisation has provided residential care and outreach programmes to those living with HIV/AIDS since 1989. Its pediatric palliative care unit accommodates eight children who are either very poor, or who do not have relatives to look after them or who require stabilisation before returning to the community. A visiting pediatrician attends to medical needs on site. The residential staff members have received training in basic palliative care from IHS and HOSPAZ and are encouraged to spend time with the children, holding and supporting them and providing companionship and comfort. Managers at the home have noticed a significant drop in seriously ill children since the successful implementation of the Prevention of Mother to Child Transmission (PMTCT) programme and the advent of ART. Added to this has been a lack of awareness of the service and difficulties of transporting children to the clinic. Should the current trend persist of diminishing referrals for children requiring hospice admission, the pediatric ward maybeclosed.

5.5.9 HBC Organisations

The impact of HIV/AIDS upon families in Zimbabwe has heightened the need for quality HBC in affected communities. In an attempt to identify areas of palliative care and HBC requiring increased support and attention HOSPAZ undertook a survey of its members in 2005 to gather information regarding services in line with the national HBC standards [19]. The survey revealed that while significant efforts are being made through programmes specifically designed for the care and support of children, the integration of programming for Orphans and Vulnerable Children (OVC) including those children living with HIV/AIDS, within existing HBC initiatives has occurred at a very slow pace. Too often, services for children are implemented as a separate programme, even within the same organisation or the same household. In addition, the landscape of palliative care and HBC is changing due to ART. Caregivers, who are the entry point into the community, need training to help children on ART and refer to a health centre when appropriate. Due to these findings, the integration of palliative care into HBC, OVC, ART and other programs 76 J. Hunt and E. Garanganga has become a priority to ensure that children registered with parallel services benefit immediately from pediatric palliative care as appropriate. This should result in long term sustainable care that can respond to the changing health needs of children living with HIV and other life-threatening illnesses.

5.5.10 Impediments to Pediatric Palliative Care

Despite the laudable efforts against great odds by the champions of pediatric palliative care in Zimbabwe, a critical analysis of the state of pediatric palliative care in the country described above identifies several areas for improvement. The high demand for services and the very low numbers of palliative care trained personnel result in rushed interviews and a shortage of time spent with each child. Palliative care practitioners interviewed while researching this chapter without exception acknowledged that they felt they were unable to deliver good pediatric care because of this. The MAP survey conducted by HOSPAZ in early 2005 noted that HBC programmes and services are not providing good quality palliative care services to PLWHA or people with chronic illnesses according to national standards. Research on the palliative care needs of children in Zimbabwe suffering from AIDS [20] revealed that there are gaps in holistic care provision especially in relation to medication, nutrition support as well as bereavement and counseling services. Adherence to the WHO definition of pediatric palliative care as well as national palliative care standards is therefore compromised on several fronts. Care plans are often not undertaken in consultation with patients and families and referral systems are weak. Certain key topics such as stigma, discrimination and HIV testing are sometimes not discussed by HBC providers and perhaps most importantly, training was found to be inadequate in these and other important areas such as counseling of children and discussion of topics such as death and dying. During the HOSPAZ review of the Programme of Support in 2009 [21] in which HOSPAZ partners implemented palliative care for children, it was discovered that HBC caregivers needed far better training in counseling skills and communicating with children. It is worth noting however that the above findings relating to HBC provision of palliative care differ significantly from the specialist services provided by IHS. Here human resources are well trained and skills for working with children are evident. Further research is necessary to explore how to bridge the gap in palliative care implementation by specialist services and HBC providers.

5.5.11 Literature and Tools

Toolkits and training materials relating to pediatric palliative care in Zimbabwe have been developed domestically in recent years. A training manual for communities caring for very sick children at home was published by HOSPAZ and the MOHCW in 2006. Palliative Care for Children: a Training Manual for Communities in Zimbabwe aims to enhance the provision of palliative care services to children 5 Pediatric Palliative Care in Zimbabwe 77 infected and affected by HIV and AIDS by giving community based care providers the skills and knowledge needed to provide quality HBC to children. This manual has been used for training the 60 HBC organisations in the National Activity Plan for Orphans and Vulnerable Children referred to earlier. Say and Play [22] is a tool that has been developed for regional use in Zimbabwe. While it has a broad goal to help children through many difﬁculties in life, two topics relate to palliative care directly. Topic 4 focuses on the child’s emotions when their caregiver is ill, equipping them with understanding and helping to identify community resources to manage the situation. Topic 5 is a comprehensive approach to talking to children about death and helps families, friends and community volunteers gently explore this sensitive area in a child-friendly manner. The Children’s Antiretroviral Therapy (ART) Literacy Toolkit for Communities [23] forms part of the SAfAIDS Kids ART Education Series. The package combines knowledge, facts and creative fun activities centred on children and ART. Games, stickers and posters complement the booklets addressing all aspects of children and ART. A comic strip book accompanied by information cards designed for helping children understand the complexities of HIV/AIDS and ART has been developed by Catholic Relief Services and awaits publication. ‘Chipo’s Heroes’[24] has been written with a strong emphasis on placing the ill child ﬁrmly in the family and community with practical guidance on how to manage conversations about illness, death and social problems such as stigma and discrimination.

5.6 Conclusion

Pediatric palliative care initiatives in Zimbabwe are growing in response to the high levels of HIV infection and cancer in the country but presently fall short of achieving full potential and meeting the definition of quality palliative care as defined by the WHO. Depleted human resources, shortage of funds dedicated to scaling up health care and a legacy of economic ruin and poverty contribute to an environment where support and some elements of palliative care have come to mean good enough care. Despite this somewhat bleak portrayal of a country struggling to regain its standing in palliative care circles, there are indeed examples of excellence and triumph over adversity. To ensure that these initiatives meet at least minimum pediatric palliative care standards a candid examination of pediatric palliative care within the formal health sector, private initiatives and community based programs against the National Community Home Based Care Standards, Palliative Care Standards for Zimbabwe and the APCA Standards for Providing Quality Palliative Care Across Africa can positively direct the character and growth of this field in the near future. Through quality training, good supervision, effective implementation of standards and the existing dedication of care providers in communities throughout the nation, there is every reason to expect and demand significant improvement of palliative care services at all levels to ensure that all children living with life limiting conditions in Zimbabwe receive the care they deserve. 78 J. Hunt and E. Garanganga

References

1. Africa Palliative Care Association (APCA) (2010) Standards for providing quality palliative care across Africa. Elton John AIDS Foundation and APCA, Kampala, Uganda 2. Brakarsh J (2009) Say and play: a tool for young children and those who care for them. Project Concern International, Lusaka 3. Martin R, Hunt J, Farrell C, Page S (2008) Children’s antiretroviral therapy (ART) literacy toolkit for communities. SAFAIDS, Harare 4. Ministry of Health and Child Welfare (2007) Health proﬁle. Report. 5. Ministry of Health and Child Welfare (2008) Inter-censal demographic health survey report. Ministry of Health and Child Welfare, Zimbabwe 6. Central Intelligence Agency (2011) Zimbabwe. The World Factbook. https://www.ciagov/ library/publications/theworld-factbook/geos/zi/html. Accessed 1 May 2011 7. Ministry of Health and Child Welfare (undated a) National health strategy for Zimbabwe, 1997–2007. Government Printers, Harare 8. HOSPAZ (2010). NAP end of project evaluation: Palliative care for children project (2007– 2010). Lisenta Enterprises, Harare 9. World Health Organisation (2008) Integrated management of childhood illnesses for high HIV setting. WHO, Geneva 10. Ministry of Health and Child Welfare (2009) Palliative care standards for Zimbabwe. Design Inc., Harare 11. Ministry of Health and Child Welfare (2010) AIDS and TB report. Ministry of Health and Child Welfare, Zimbabwe 12. World Health Organisation (2004) Community health approach to palliative care for HIV/AIDS and cancer Patients in Africa: Palliative care project in Africa. WHO, Geneva 13. Ministry of Health and Child Welfare (2004) National community home based care standards. Commercial Printers, Harare 14. Hunt J (2009) Family carers in resource-poor countries. In: Hudson P, Payne S (eds) Family carers in palliative care. Oxford University Press, Oxford, pp 73–92 15. Sepulveda C, Marlin A, Yoshida T, Ullrich A (2002) Palliative care: the World Health Organisation’s global perspective. J Pain Symp Manage 24:91–96 16. Wikipedia (2011) Economy of Zimbabwe. Wikipedia http://en.wikipedia.org/wiki/Economy_ of_Zimbabwe. Accessed 1 May 2011 17. National Cancer Registry (2006) National cancer registry report 2006. National Cancer Registry, Zimbabwe 18. Ministry of Health and Child Welfare (undated b) National health strategy for Zimbabwe, 2009–2013. Government Printers, Harare 19. Hospice Association of Zimbabwe (HOSPAZ) (2005) Membership Assistance Programme Survey. HOSPAZ 20. Government of Zimbabwe (2010) Country cancer proﬁle, Zimbabwe. Government Printers, Harare 21. Hunt J (2006) Zimbabwe. In: Wright M, Clark D (eds) Hospice and palliative care in Africa: a review of developments and challenges. Oxford University Press, Oxford, pp 235–255 22. Garanganga E (2009) Palliative care needs of children suffering from AIDS, Zimbabwe. CPUT Theses & Dissertations. Paper 31 23. Martin R, Hunt J, Farrell C, Taylor J (2011) Chipo’s heroes: how ARVs help Chipo stay strong. Catholic Relief Services, Harare 24. Ministry of Health and Child Welfare (2006) Palliative care for children. A training manual for communities in Zimbabwe. UNICEF, Harare. Part III Asia Chapter 6 Pediatric Palliative Care in Armenia

Colette Cunningham, Gayane Tovmasyan, and Narine Movsisyan

Abstract This chapter discusses pediatric palliative care in Armenia that is set against a post-Soviet republic in transition. Inheriting the health system of the Soviet Era, Armenia has a centralized hierarchic system where decisions are made centrally by the Ministry of Health. It has a well-developed structure that predominately focuses on hospital care and includes specialists from various domains. Following independence and a socio-economic crisis, radical reform in healthcare was undertaken and is still ongoing. In the Soviet system, healthcare was free and therefore accessible to all of the population, but people did not have a choice of doctor or medical institution. This changed in the years after independence when various fees and a private healthcare system were introduced. Privatization is well underway in Armenia, but it is also expensive and therefore only accessible to those who are able to pay out-of-pocket. Services such as palliative care are available to those who can pay; however, these services are not yet recognised as part of the national healthcare system. It is a relatively new concept to Armenia. In 2003, the Armenian Pain Control and Palliative Care Association (APC&PCA) was established. Its 146 members are mainly leading specialists from the National Center of Oncology. Since its inception, it has been pioneering palliative care and the provision of essential palliative care medicine. More recently, a small group of dedicated people formed an informal working group to guide efforts of palliative care development in Armenia. This Palliative Care Working Group (PCWG) has now been approved by the Ministry of Health and tasked with writing and creating a National Strategy Policy for Palliative Care Development. Palliative Care training is taking place but it does not include pediatric palliative care. Essential medications for palliative care are difﬁcult to obtain—making pain control almost impossible to achieve, especially outside the hospital setting and in rural areas. There is a lack of any oral opioids, and morphine is available in ampoule form only; problems are encountered because of limitations in prescribing practice. Although palliative care has commenced in Armenia, it will take considerable time, resources, and effort to scale up the provision of care throughout Armenia for both adults and children. The provision of palliative care services will be a challenge because health care resources are limited.

C. Cunningham (B) Department of Epidemiology and Public Health, Brookﬁeld Health Sciences Center, University College Cork, Cork, Ireland e-mail: [email protected]; [email protected]

C. Knapp et al. (eds.), Pediatric Palliative Care: Global Perspectives, 81 DOI 10.1007/978-94-007-2570-6_6, C Springer Science+Business Media B.V. 2012 82 C. Cunningham et al.

Keywords Armenia · CIS region · Pioneering pediatric palliative care · Country in transition

6.1 Introduction

Armenia is one of the world’s oldest civilizations that once included Mount Ararat, which is traditionally identified in the Bible as the mountain that Noah’s ark rested on after the flood. It was the first country in the world to officially embrace Christianity as its religion (c. 300). Throughout most of its long history, Armenia has been invaded and under threat of domination by foreign forces, through which Armenians became both cosmopolitan and fierce protectors of their culture and tradition. Armenia today is a nation that is fiercely traditional, conservative, and proud of its family values and culture. The Republic of Armenia is a post-Soviet republic located in the southern Transcaucasus. Landlocked, Armenia is bordered by Georgia to the north, Turkey to the west, Iran to the south, Azerbaijan to the east, and Azerbaijan’s Naxcivan exclave (Nagorno-Karabakh) to the southwest. There are ongoing peace talks between Armenia and Azerbaijan in relation to this corridor of land. Armenia formally declared its independence in September 1991. The head of state is the President. Administratively, the country is divided into 11 provinces known as Marz; 10 of the provinces are further divided into communities, with the 11th, the Province of Yerevan, being the administration center with the capital city Yerevan. The country spans 29,743 square kilometers of mountainous terrain with a population of 2,966,802 (64% urban, 36% rural). Fifty-five percent of the population is under 18 years of age, with an average household size of 3.8 people; 64% of households are headed by men. Armenia has a large Diaspora estimated at 8 million who are scattered in communities around the world; one million each live in the US and Russia, and significant Armenian communities are located in France, Iran, Georgia, Lebanon, Argentina, and Canada. Emigration has been particularly heavy since independence from the Soviet Union and has had a social and economic impact on the nation; families are divided between countries, elderly parents remain, and Armenia experiences “brain drain” especially in the areas of healthcare and education. Shortly after the collapse of the Soviet Union, Armenia was plunged into an economic and social crisis. Between 1990 and 1993, the country’s Gross Domestic Product (GDP) contracted by 50%; the largest decline of the Commonwealth of Independent States [9]. In 2005, a UNICEF report on the state of children in Armenia stated that “nearly a quarter of the country’s population had emigrated” seeking a “better life abroad”. The knock-on effect of the country’s decline, along with the impact of the war between Armenia and Azerbaijan in 1992–1993, has until recently been reflected in over “half of the country’s population living below the national poverty line with one in seven unable to meet their basic needs for 6 Pediatric Palliative Care in Armenia 83 survival” [9]. As a result of government commitment and international support, a strong Poverty Reduction Strategy has been implemented and reduced the level of poverty in Armenia. According to the World Bank Preliminary Study in 2009, 28.4% of Americans lived in poverty [2]. Despite the challenges faced by Armenia since independence and the steady economic growth in the past decade, there is still much to do, especially in the area of social sector spending. Through strong government commitment and the implementation of the national Poverty Reduction Strategy Paper (PRSP), many social indicators are improving such as child survival rates. Nevertheless, further work is required if Armenia is to reach the Millennium Development Goals by 2015 [5].

6.2 Armenia’s Health System

Inheriting the health system of the Soviet Era, Armenia has a centralized hierarchic system where decisions are made centrally by the Ministry of Health. It has a well-developed structure that predominately focuses on hospital care and includes specialists from various domains. Following independence and a socio-economic crisis, radical reform in healthcare was undertaken and is still ongoing. In the Soviet system, healthcare was free and therefore accessible to all of the population, but people did not have a choice of doctor or medical institution. This changed in the years after independence when various fees and a private healthcare system were introduced. Privatization is well underway in Armenia, but it is also expensive and therefore only accessible to those who are able to pay out-of-pocket. Services such as palliative care are available to those who can pay; however, these services are not yet recognised as part of essential healthcare for those in need. In spite of privatization, the Armenian national health system is subject to state control; almost all medical institutions are state-owned and directly managed by health authorities [8]. Over the last decade the Government of Armenia, supported by major international donors, has supported the strengthening of Primary Health Care (PHC); this has lead to substantial progress in equipping and renovating two-thirds of Armenia’s most needy rural health facilities. An ambulatory medical network is in place based on the population in a given community. A Basic Benefits Package was introduced allowing everyone to access PHC services (maternity services included). The PHC system is based on the introduction of family medicine. In PHC centers, oncology services are free of charge for all age groups and are the first point of contact for patients with neoplasms. A referral network is in place where patients are referred to specialized institutions for confirmation of diagnosis and for specialized treatment such as chemotherapy. Once treated, patients return home to their local PHC center for follow-up treatment management. Palliative care is not one of the services offered at PHC centers although with appropriate education it could be introduced into this structure, and home-based care could be offered as an additional service to the current referral network. All treatments at PHC centers are provided free of charge including the symptomatic treatment of patients with life-threatening 84 C. Cunningham et al. illnesses, like cancer and HIV/AIDS for example. Specialized care of children is provided by a number of specialized centers: the HIV/AIDS Prevention Center, the Anti-Tuberculosis Center, the National Oncology Center, the Pediatric Hematology Unit, and the Mental Health Institute. During the same time period the Government of Armenia, supported by major international donors, made major improvements to the health system that has by and large improved access to healthcare for Armenians. Improvements include an Open Enrollment (OE) system where every resident of Armenia has a right to choose his/her own health care provider (2.5 million people are now enrolled in the OE computerized database; this amounts to 85–90% of resident population of Armenia). New systems of health care financing and monitoring have been established, and government spending on primary health care has increased from 15 to 35% since independence. The increase in spending has included training 25% of Armenia’s PHC physicians. Quality Assurance practices have been introduced to ensure the quality of PHC services nationwide. These improvements can been seen in health indicators such as maternal mortality rates; post-partum hemorrhage rates have reduced by 60%, going from 5.4% in 2005 to 1.7% in participating facilities [11]. According to an article on UNICEF’s website: The Government of Armenia has been making concerted efforts to increase public expenditure on health. In recent years there have been steady improvements in this area, however public expenditure channeled from the state budget to health sector as a percentage of GDP is still not sufficient. In 2006 the Government of Armenia spent 1.64% of its GDP on health sector. [10] The government continues to work towards improving health services for the population of Armenia. Maternal and child health, reproductive and family planning, cancer, HIV/AIDS, and Tuberculosis (TB) are all priority areas, and Armenia should meet the Millennium Development Goals in all of these areas by 2015 [5]. The Ministry of Health has also recently made a commitment to prioritize the integration of palliative care into the national health system. Therefore it is hoped that those who are in need of palliative care should be able to access this vital service in the coming years.

6.3 Palliative Care in Armenia

The World Health Organization (WHO) defines palliative care as: an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual (2002). Palliative care is relatively new to Armenia. In 2003, the Armenian Pain Control and Palliative Care Association (APC&PCA) was established. Its 146 members are mainly leading specialists from the National Center of Oncology. Since its 6 Pediatric Palliative Care in Armenia 85 inception, it has been pioneering palliative care and the provision of essential palliative care medicine. It is a member of the European Association of Palliative Care (EAPC), the International Association of Hospice and Palliative Care (IAHPC), and the Worldwide Palliative Care Alliance (WPCA). The APC&PCA is also a member of the EAPC task force for the organization of palliative care and is a principle collaborator; EAPC considers APC&PCA responsible for palliative care development in Armenia [4]. More recently, a small group of dedicated people formed an informal working group to guide efforts of palliative care development in Armenia. This Palliative Care Working Group (PCWG) has now been approved by the Ministry of Health and tasked with writing and creating a National Strategy Policy for Palliative Care Development in Armenia. Once developed, the strategy will be incorporated into the new national health strategy that is under development [4]. In 2009, a Palliative Care Needs Assessment for Armenia identified the lack of policy guidance from the Ministry of Health as one of the main barriers to palliative care development. In addition, there is no comprehensive national cancer control program, and although palliative care provision has commenced in Armenia, there is neither a source of funding nor is there any recognition of palliative care as a specialty or sub-specialty. The Yerevan State Medical University is, however, planning to address this by developing a program for medical students and postgraduates and by eventually developing a fellowship program. Continuing education courses are also planned. Currently, the National Institute of Health has developed a special 1-week course on palliative care for the continuing education of pharmacists and physicians [4]. There is, however, no specific mention of pediatric palliative care nor of its inclusion in any of the aforementioned courses. However, of note, all palliative care practices, standards, and guidelines for Armenia are based on the WHO definition of palliative care and on recognized international best practice guidelines [4]. Essential medications for palliative care are difficult to obtain—making pain control almost impossible to achieve, especially outside the hospital setting and in rural areas. There is a lack of any oral opioids, and morphine is available in ampoule form only; problems are encountered because of limitations in prescribing practice. However, efforts are being made to address these issues [4]. There is only one operating palliative care program open in the country, the Palliative Care Center. It has 8 beds and, as well as the hospice unit, can care for 2 day-patients. Funding for the center is from private resources, but additional financial support is needed for the service to continue. A new service—Saunders Center, named after Dame Cicely Saunders of St. Christopher’s Hospice, London—was created in 2010. It is not yet operational due to regulatory challenges in obtaining an operational license. Once operational, it will offer a home-based palliative care service to both adults and children within the city of Yerevan. It will also offer pain control management using internationally recognized pain measurement tools. It will operate as a private health facility and will therefore be a paying facility. Another challenge for the registration of the center is that they do not have 86 C. Cunningham et al. specialized, palliative care-trained staff, even though the qualifications do not exist in Armenia. Although palliative care has commenced in Armenia, it will take considerable time, resources, and effort to scale up the provision of care throughout Armenia for both adults and children. The provision of palliative care services will be a challenge because health care resources are limited in Armenia. The aforementioned Palliative Care Needs Assessment provided recommendations and a framework for the development and scaling up of palliative care in Armenia, and it also called for clear policy and guidance from the Ministry of Health in order to overcome the current obstacles and to establish palliative care as a recognized component of the Armenian health care system. The Palliative Care Task Group, APC&PCA, and the National Oncology Center with the support of Open Society Institute are collaborating with the Ministry of Health to move the agenda forward.

6.4 Children’s Palliative Care in Armenia

Tadevoysan et al. [7] state, “The problem of palliative care [in Armenia] is especially urgent in pediatrics”. The child population at the beginning of 2010 was 19.8% for the age group of 0–15 out of the total number of the population. This has declined from 32.1% in 1990. The total child population in the 0–5 age group is 162,000 with 41.9% of that age group being classified as poor and 8% as extremely poor. The morbidity rate from life-limiting illnesses in children has increased greatly since the 1990s. For example, in 1990 the incidence rate of known childhood cancers was 17.5 per 100,0001 which has risen to 42.8 per 100,000 in 2007 [7]. One explanation for this increase may simply be an increase in early identification of childhood cancers because of better diagnostic facilities and increased healthcare professional capacity. In any given year, there are between 50 and 100 new cases of children’s cancer identified in Armenia. According to the Armenian Oncologists Association, cancer particularly affects children between the ages of 2–4 and 10–12 years with the causal effect being congenital; however, there is no evidence-based research currently available to support this claim [3]. Table 6.1 demonstrates children’s cancer mortality rates according to age groups in 2009. There are a total of 763 deaths. This is a huge number of children dying from cancer without any appropriate palliative care services. In most cases, and especially for poorer families, children are sent home to die with no healthcare support. Approximately 60–65% of the neoplasms identified are treatable with positive outcomes, but the lack of available funding is an issue especially as treatment is very

1 In Armenia statistically children are considered between the age of 0–15, as able-bodied population are deﬁned as those aged between 16 and 59 and available for the Armenian workforce, however, UNICEF classify children in Armenia to be between the age of 0 and 18. This also has consequences for health services as children’s services are for those between 0 and 15 only. 6 Pediatric Palliative Care in Armenia 87

Table 6.1 Children’s cancer mortality rates in Armenia in Age groups Male Female 2009 0–4 299 229 5–9 18 21 10–14 32 17 15–19 107 40 Total: 763 456 307

Crude Total Mortality rate from malignant neoplasm for 2009 is 166/100 000 population Total Mortality Rate for 2009 27,560 Source: National Oncology Center

expensive; the government allocates AMD 190,000 (approximately US $525) per child, but this does not go far enough for treating a seriously ill child [3]. Therefore, unless families can afford the extra expense, children without financial means often go untreated and return home to die [6]. Those involved with treating children do their best to prescribe treatment to children in need, no matter what the cost, and therefore rely heavily on outside support from NGOs, various Armenian Diaspora organizations, and charitable events [1]. The aforementioned scenario reiterates the urgency of palliative care for children in Armenia. In a study undertaken by Tadevoysan et al. to identify the needs of children’s palliative care and parents’ perceptions and understanding of the issues, they found that of the 193 respondents only 29% reported the need for palliative care and only 13% had heard of palliative care. However, among families with a terminally ill relative, 82% did not know or understand palliative care. Awareness of palliative care was associated with the education level of the respondents, with awareness being highest in those with higher levels of education [7]. According to the WHO, “palliative care for children represents a special, albeit closely related field to adult palliative care,” and they define palliative care appropriate for children and their families as follows for all pediatric chronic disorders:

• Palliative care for children is the active total care of the child’s body, mind and spirit, and also involves giving support to the family. • It begins when illness is diagnosed, and continues regardless of whether or not a child receives treatment directed at the disease. • Health providers must evaluate and alleviate a child’s physical, psychological, and social distress. • Effective palliative care requires a broad multidisciplinary approach that includes the family and makes use of available community resources; it can be successfully implemented even if resources are limited. • It can be provided in tertiary care facilities, in community health centers and in children’s homes [12]. 88 C. Cunningham et al.

Sadly, there are no child-specific palliative care services in Armenia that meet all of the above criteria. Traditionally, families care for children suffering from chronic illnesses in their own homes. More often than is liked, the words “we can do no more” are spoken, and parents return home with their sick child with no education on how to care for the child and with no home care services. Families are armed with little more than love for their child and are ill equipped to cope with the challenges of advanced disease such as cancer, TB, and HIV/AIDS. Those who can afford to pay out-of-pocket costs can engage the services of private pediatricians, physicians, oncologists, home care nurses, or other specialists. However, these are in the minority as there is little or no financial support for home care except when a child is disabled, and then there is a government disability account that helps families to care for their children at home. It is unknown if pain and symptom control, essential components of palliative care, are given to children with life-threatening conditions in traditional home care settings. Yet all is not lost, there are a few child-centered services, albeit not specific palliative care services, which offer components of palliative care to severely sick children. These centers are: Arabkir Joint Medical Center (Arabkir JMC) & Institute of Child and Adolescent Health (ICAH) is a non-for-profit charitable organisation that was founded in 1995 by joint efforts of doctors from Belgium, Switzerland, and Armenia. The aim of the organisation is to improve the health and well being of sick children (children with chronic disease, physical and mental developmental problems, and children with ongoing treatment needs such as renal dialysis) in Armenia. They provide inpatient and outpatient care, continuous education for healthcare professionals and psychosocial support to children. The ICAH provides a wide spectrum of care to children and adolescents who are predominately curative. Nonetheless, it is a child-friendly service that focuses on the child, and many of their patients suffer from chronic and life-threatening conditions. Annually, they run a summer camp. In 2010 Aparan Summer Recreation Camp, a unique facility in Armenia provided 120 children with special needs—chronic illness, autism, and physical and mental disabilities—with a summer rest for free. Treatment is continued for children with treatment regimes that cannot be stopped. Given their child-centered approach, it would be an ideal starting point for the initiation of pediatric palliative care (Fig. 6.1). Mission East’s Project “A Healthy Start” was originally designed to challenge and change existing social attitudes and healthcare practices based on negative stereotypes of disability in Armenia. The project’s overall aim is to promote disability rights and ensure the access of children with disabilities and their families to adequate health care and community services by developing a comprehensive and inclusive model of identification and rehabilitation of childhood disabilities as well as supporting the inclusion and participation of children with disabilities and families in their respective communities. The project is implemented by Mission East and local Armenian partners through a multi-level approach, including individuals, families, local communities, service providers and decision-makers. All the partners are established in the field of disability support, services and/or advocacy in 6 Pediatric Palliative Care in Armenia 89

Fig. 6.1 Child receiving care at Arabkir Joint Medical Center Source: http://www.arabkirjmc.am

Armenia. The project has been recognized in Armenia as a best practice for children with disability. It works closely with the Arabkir JMC & ICAH for children in need of specialised pediatric care. While its focus is not palliative care, children who are in the terminal phase of their illness are offered quality healthcare and support is also given to the families. The “Association Gayush of Seriously Ill Children’s Home Care” was set up in 2008 in order to provide palliative care for children in Armenia. Staff (nurses and doctors) were trained in Poland through the mother group Gajusz Foundation in Lodz in Poland. The training consisted of theoretical lectures in palliative care as well as a practicum in Polish children’s homes. The Association in Armenia caters to children with cerebral palsy, spinal muscular atrophy, osteogenesis imperfecta, and encephalopathy. Currently, Association Gayush is taking care of 10 children with neurodegenerative illnesses and persistent neurologic deﬁcits. Association Gayush would like to expand their services to all children in need of palliative care in Armenia, but they are restricted by resources, including human resources. Nonetheless, they work closely with families and children suffering from long-term illness and offer a vital service in the Yerevan area. They provide limited pain management to children—limited due mainly to legal restrictions; their hands are tied as they are currently not a registered medical center with permission to admin- ister medication. As previously discussed in the chapter, essential palliative care medicine is not widely available in Armenia and even less so to organizations such as Association Gayush. 90 C. Cunningham et al.

6.5 Conclusion

Everyone is entitled to live and die with dignity and free of pain, including children. Palliative care offers this to people who are suffering from life-threatening illnesses. Palliative care is a cost-effective care aimed at improving the quality of life of children and their families and a care that also offers hope and solace. Palliative care is in its initial stages in Armenia both for children and adults. The journey ahead promises to be a long and arduous one as there is still much to do in relation to policy, education, drug availability, and political will. This is especially true in relation to children’s palliative care given the traditional and conservative nature of Armenian culture and society. However, one thing in favor of pediatric palliative care is the fact that Armenians love their children and will do anything to ensure their well-being. Dialogue has commenced in Armenia, and there is hope that this area of care will develop signiﬁcantly over the coming years—especially with the dedication of some of its champions who are determined to see it happen for their people and for their children.

References

1. Amirjanyan M (2010) Armenian doctors have to both treat cancer and raise funds for it. PanArmenianNetwork.http://www.panarmenian.net/eng/society/details/44728/. Accessed 17 May 2010 2. ARKA 15 News Agency (2009) WB: poverty rate reaches 28.4% in Armenia in 2nd q 2009. http://www.arka.am/eng/economy/2009/11/17/17650.html. Accessed on 30 Dec 2010 at 20h00. Accessed 2011 3. Badalyan G (2010) 50–100 cases of children’s cancer in Armenia. Aysor. http://www.aisor. am/en/news/2010/06/14/cancer-children/. Accessed 04 Feb 2010 4. Connor S, Karapetyan H (2010) Palliative care needs assessment for Armenia. Open Society Institute, New York, NY 5. MDG Monitor (2010) Armenia. United Nations. http://www.mdgmonitor.org/ country_progress.cfm?c=ARM&cd=51. Accessed 17 May 2010 6. Movseyan Dr. Narine (2010) Palliative care task group in Armenia. Personal communication. Accessed 28 Dec 2010 7. Tadevoysan A, Karapetyan H, Fuortes L (2008) Palliative care in Armenia: current situation and problems. Presented at 19th World Congress of Children’s Hospice International 2008. Washington DC. http://www.chionline.org/pressreleases/Plenary%20Sessions/ PALLIATIVE%20CARE%20IN%20ARMENIA.%20presentation.pdf 8. Tonoyan T (2004) Health systems in Armenia: past, present and prospects. Discussion paper. http://www.ww.tu-berlin.de/diskussionspapiere/2004/dp11-2004.pdf. Accessed on 17 May 2010 9. UNICEF (2005) Armenia, for every child, health, education, equality, protection advance humanity, UNICEF, New York, NY 10. UNICEF (undated) Armenia: health. UNICEF. http://www.unicef.org/armenia/health.html. Accessed 17 May 2010 11. USAID (2010) USAID/Armenia programs: healthcare. USAID. http://armenia.usaid.gov/en/ node/271. Accessed 17 May 2010 12. The World Health Organisation (1998) Cancer Pain Relief and Palliative Care in Children, WHO ISBN-13 9789241545129 Chapter 7 Pediatric Palliative Care in India

Lulu Mathews and K. Suresh Kumar

Abstract Palliative care has been developing in India since the mid-1980s. There are 138 hospice and palliative care services spread over the different states and union territories. These are mostly concentrated in large cities, with the exception of Kerala, where they are much more widespread. Considering that less than 1% of the needy people have access to palliative care services in India and there are barriers to the development of these services, it will be a long time before pediatric palliative care assumes importance in India. This chapter highlights the barriers to the development of palliative care services in India with special reference to pediatric palliative care programs. This chapter also gives an overview of the available pediatric palliative programs in India.

Keywords India · Developing economy · Morbidity pattern · Children with life limiting illnesses · Pediatric palliative care programs · Barriers · Success

7.1 India – General Features

7.1.1 Geographical Features

India is a country in South Asia bounded by the Arabian Sea, Bay of Bengal, the Indian Ocean, and the Himalayas. It is the seventh largest country in the world, with a total land area of 3,287,263 km2 (1,269,219 sq mi) [1]. India forms only 2.42% of the total world geographic area but supports 17.5% of the world’s population. India is divided into seven physiographic regions- the northern mountains including the Himalayas, the Indo-Gangetic plains, the Thar Desert, the Deccan Plateau, the East and West Coasts and the Bordering seas and islands [2]. India hosts six major climatic subtypes, ranging from arid deserts, alpine tundra and glaciers, and

L. Mathews (B) Current afﬁliation: Institute of Palliative Medicine, Calicut, Kerala 673008, India Former afﬁliation: Department of Pediatrics, Government Medical College, Calicut, Kerala 673008, India e-mail: [email protected]

C. Knapp et al. (eds.), Pediatric Palliative Care: Global Perspectives, 91 DOI 10.1007/978-94-007-2570-6_7, C Springer Science+Business Media B.V. 2012 92 L. Mathews and K.S. Kumar humid tropical rainforests. Many regions have starkly different microclimates [2]. India’s climate is dominated by monsoon winds, which determine the rainfall all over the country. The agricultural economy of India is mostly dependant on these monsoons.

7.1.2 Population

India comprises 28 states and 7 Union territories and has a 2010 population of around 1.15 billion people, with 72.2% living in 638,000 villages and the remaining 27.8% populating 5,100 towns and around 380 urban settlements. However, India has an astonishing demographic divide where more than 50% of its population is below the age of 25. As per the 2001 Population Census of India, the literacy rate of India is 65.4%. The Kerala and Bihar regions have the highest and lowest literacy rates of 90.9% and 46%, respectively [3].

7.1.3 Unity in Diversity

A most striking feature of India is the diversity evident in the geographical distribution of India’s ethnic and linguistic groups. The demography of India is truly diverse. India, while being the largest democracy in the world, has a civilization more than five thousand years old that possesses multicultural, multilingual and multi-religious origins. The cultural origins of the Indian subcontinent can be traced back to the Indus Valley Civilizations, the remains of which are cherished even today. Every region of the country has different customs and traditions. People from different regions of the world- Chinese, Jews, Arabs, Portuguese, French, and British to name a few- came to India and have influenced the present composition of Indian culture. It is this diversity which has created a sense of unity among Indians. There are uncountable number of languages and dialects spoken in India. A minimum of 30 different languages have been identified along with 2,000 dialects. This diversity has enriched the social life and is also reflected in the health care system practiced in India. Ancient Indian medicine traces its origin to more than 2,500 to 3,000 years ago. Some of the pioneers of ancient Indian medicine were Dhanwanthari, Charaka, and Sushruta. “Sushruta’s Compendium” and “Charaka’s Compendium” form the cornerstone of the Indian medical tradition of Ayurveda, meaning science of life [4, 5].

7.1.4 Health Care

Health care in India features a universal health care system. Public health care is provided by the central and state governments through the Health and Family Welfare Departments. The National Health Policy was endorsed by the Parliament of India 7 Pediatric Palliative Care in India 93 in 1983 and updated in 2002 [6]. Government hospitals, some of which are among the best hospitals in India, provide treatment either free or at minimal charges. Most essential drugs are offered free of charge in these hospitals. The charges for basic in-hospital treatment and investigations are much less compared to the private sector. The cost for these subsidies comes from annual allocations from the central and state governments. Apart from modern medicine, alternative systems of medicine like Ayurveda, Homeopathy, Unani, and Siddha are also popular in India. Basic health care including maternal and child health services in rural areas of India are delivered mainly through government-run primary health centres and sub-centres. Patients who need specialized care or have complicated illnesses are referred to secondary hospitals (often located in Taluk and District headquarters) and tertiary care hospitals and teaching hospitals. Apart from the state run health facilities, many states have premier health institutes run by the central government. The government sector is generally understaffed, under financed and under equipped to handle the massive load of patients. In order to meet manpower shortages and reach world standards, India would require hefty investments in the health sector. It is widely accepted that the deficiencies in the public sector health system can only be overcome by significant reforms. Partnership with the private sector has emerged as a new avenue of reforms in India. The private sector accounts for more than three-quarters of total health expenditure, an extremely high proportion by international standards [7]. The heath care facilities in the private sector are run by individuals, non-governmental organizations (NGOs), charitable trusts, religious organisations, co-operative societies, and corporate houses. But the one disadvantage is that the private sector is somewhat unregulated, with complaints of poor quality, overcharging and sometimes unethical practices.

7.1.5 Diversity in Health Issues

Despite developments achieved in the health sector, India still suffers from high levels of malnutrition and disease, especially in rural areas. Being a developing economy, India has not only communicable diseases but also life style diseases such as diabetes mellitus, ischemic heart disease, and hypertension, especially in the urban areas. Considering the vast population, morbidity due to cancers and trauma is also significant. However, at the same time, India’s health care system also includes entities that meet or exceed international quality standards. Health tourism in India has been growing in recent years and as such India is a popular destination for medical tourists who receive good quality medical treatment at lower costs than in developed countries. According to the Investment Commission of India the health care sector has experienced phenomenal growth of 12% per annum in the last 4 years [8]. Rising income levels and a growing elderly population are all factors that are driving this growth. In addition, changing demographics, disease profiles and the 94 L. Mathews and K.S. Kumar shift from chronic to lifestyle diseases in the country has led to increased spending on health care delivery [9]. Even so, the vast majority of people in India suffer from a poor standard of health care infrastructure that has not kept up with the growing economy. Despite having centers of excellence in health care delivery, these facilities are limited and are inadequate in meeting current health care demands. Nearly one million Indians die every year due to inadequate health care facilities and 700 million people have no access to specialist care [10]. Furthermore, 80% of specialist doctors serve in urban areas [10]. Forty percent of the primary health centers in India are understaffed. According to World Health Organization (WHO) statistics there are over 250 medical colleges in the modern system of medicine and over 400 in the Indian System of Medicine and Homeopathy (ISM&H). India produces over 25,000 doctors annually in the modern system of medicine and a similar number of ISM&H practitioners, nurses and para- professionals [11]. The physician-patient ratio is 5.8/10,000, the nurse-patient ratio is 12.7/10,000, and the hospital bed-to population ratio is 0.9/1,000. But there is a visible urban-rural dichotomy in health care delivery in India. While urban India has 200 doctors for every 100,000 population, the ratio is much lower in rural areas [12]. Due to the deficiencies in the public health sector, the poor in India are forced to seek services from the private sector, often borrowing money to pay for services. Out-of-pocket expenses at the point of service are about 85% [13]. Hospitalisation for chronic illnesses often leads to liquidation of assets or indebtedness. It is estimated that more than 40% of hospitalised people borrow money or sell assets to cover expenses, and 35% of hospitalised Indians live below the poverty line because of incurred hospital expenses [7]. Approximately 29% of the Indian population, almost 300 million people, live below the poverty line and depend on free health services from the public sector. The inequities in the health system are further aggravated by the fact that public spending on health has remained stagnant at around 1% (0.9%) of gross domestic product (GDP) compared to the global average of 5.5%. In 2009, India spent an estimated 5% of GDP on health care. This is more than neighbouring Pakistan and China but far less than the G7 average of around 12%. In India the health care sector is largely contributed by private rather than public funds, with the private sector contributing 4.5% of GDP spent. Yet even the public health subsidy does not automatically benefit the poor. The poorest quintile of the population uses only one-tenth of the public (state) subsidies on health care while the richest quintile accesses 34% of the subsidies. The range and complexities of health issues are substantial with the equal presence of both communicable and non-communicable diseases. Only one-tenth of the population has health insurance, and spending on health care is a major cause of indebtedness. Several social insurance systems exist, such as the employee state insurance for industrial workers and the central government’s health scheme for government employees, but these cover a tiny proportion of the population and account for only about 5% of government expenditure on health [12]. 7 Pediatric Palliative Care in India 95

7.1.6 Morbidity Pattern in India

Over the last three decades there has been a general decrease in mortality in India leading to significant gains in life expectancy, both at the country and state level; however, what has happened to morbidity is yet to be assessed. The evidence of dis- aggregated morbidity prevalence in India shows a ‘J’ shaped relationship between age and morbidity, an indication that elders and children are susceptible to higher prevalence of illness. However, very little information is available about the disease profile of different population groups in India. The morbidity rate has increased significantly from 54 to 91 per thousand during the period 1995 to 2004 [14]. This increase in the prevalence of morbidity might be due to increased health consciousness among the people or better reporting by the respondents. From the state level sex-specific age-adjusted morbidity rates it can be seen that, contrary to expectations, states like Kerala, Punjab and West Bengal known for their achievements in improving social and economic conditions have the highest reported morbidity prevalence in the country. On the other hand, the socio- economically poorer states like Bihar, Madhya Pradesh, and Rajasthan have the lowest reported morbidity rates. Whereas Kerala has a morbidity prevalence of 223 and 234/1,000 population for males and females respectively, Bihar has a morbidity prevalence of 64 and 52/1,000 [14].

7.1.7 Chronic Morbidity Among Children

There are no national studies regarding the magnitude of life-limiting illnesses (LLI) among children in India. National Family Health Surveys (NFHS) concentrate on acute problems like acute respiratory infection, acute diarrhea, and malaria. The mortality rate among children has come down from 79/1,000 live births in 1992– 1993 (NFHS-1) to 57/1,000 live births in 2005–2006 (NFHS-3) [15].Withacrude birth rate of 27.2/1000 (as per the 2001 census) India has roughly 28 million births per year. The under 5 year mortality rate (U5 MR), the infant mortality rate (IMR) and the neonatal mortality rate (NMR) are respectively 69, 52 and 39/1,000 live births respectively. NMR contributes to 55% of U5MR. For every neonatal death, 20 infants have birth injuries and other complications. So it can be assumed that large numbers of children continue to live with life-threatening, complex medical conditions. These children not only need palliation of their symptoms but also psychological, emotional and spiritual support. The parents mostly feel helpless and hopeless when their children are diagnosed with LLI. If we are able to provide proper palliative care, it will help in decreasing the suffering of these children and their family members.

7.1.7.1 Life Limiting Illnesses Among Children Common life limiting illnesses among children in India are: 96 L. Mathews and K.S. Kumar

• Childhood cancer • Hematological conditions- hemolytic anemias, sickle cell disease (SCD) • Unoperated congenital heart disease (CHD) • Neurologically handicapped children- Static and progressive encephalopathies, post meningitic and post encephalitic sequelae • HIV/AIDS • Chronic kidney disease (CKD) • Diabetes mellitus

This list does not include chronic psychiatric illnesses, which are more common in the adolescent age group.

Childhood Cancers There has been enormous progress in the treatment of childhood cancers in the West and the epidemiology is well described. But there is no systematic study of burden of childhood cancer in India. Although child health is a priority health issue, childhood cancer is not a major area of focus. Considering that between 1.6 and 4.8 % of all cancer patients in India are below the age of 15 years, (33% of the population in India is less than 15 years of age compared to 18% in England) and only 2% of mortality in this age group is attributed to cancer, the morbidity rate due to childhood cancer is likely to be quite high [16]. Leukemia is the most common childhood cancer in India with Acute Lymphatic Leukemia accounting for 60–85% of all leukemias. Though the outcome is good for children with childhood cancer treated at the tertiary institutions, this result cannot be extrapolated to other parts of India. Survival data from population-based cancer registries (PBCR) better represents cancer outcomes. As reported by Arora et al. [16], PBCR data from Bangalore and Chennai shows that the 5-year overall survival for all childhood cancers combined is 37–40% [16]. Furthermore, the highest 5-year survival rates are for children with Wilms’ tumor and Hodgkins’ disease, where approximately two-thirds of the children survive for 5 years or more [16].

Hematological Conditions India has approximately 30 million beta-thalassemia carriers with a mean prevalence of 3.3% [17–19]. Every year around 10,000 babies with thalassemia are born in India. Prevalence of the beta-thalassemic trait in India is 3% of the general population but among certain communities and religions like Punjabis, Sindhis, Bengalis, Jains, and Muslims, the incidence of the beta-thalassemic trait ranges from between 8 and 15% [18, 19]. Sickle cell disease is prevalent in many parts of India, where the prevalence ranges from 9.4 to 22.2% in endemic areas. SCD is so prevalent in Central India that it accounts for 5% of admitted children. Morbidity and mortality rates are highest in children below the age of 5 years. Since SCD is prevalent in only certain parts of India, the studies are also very regionalised [20, 21]. 7 Pediatric Palliative Care in India 97

In a study conducted at the NSCB Medical College, Jabalpur, 226 out of 310 SCD cases were aged below 15 years. The chief symptoms seen in these SCD patients were joint pain (59.7%) and bony pain (51.6%). In around one-third of cases, multiple body sites were commonly affected simultaneously [22].

Unoperated Congenital Heart Diseases Pediatric cardiac care in India is still in its infancy. There have been few systematic efforts to define the burden of pediatric heart disease in India. Estimates based on published studies on congenital heart diseases at birth suggest a massive CHD burden. Absolute numbers of children with other heart diseases are also likely to be substantial [23]. The incidence of CHD in infancy varies from 4 to 12/1,000 live-births in various community-and hospital-based studies It is a fact that hospital-based studies estimate a higher prevalence as compared to community-based studies. Considering the lowest estimate of 4/1,000 live-births, approximately 112,000 infants with CHD are added every year to the total pool [24]. The number of cases of CHD recognized in the first year of life is only about two-thirds the number of cases recognized in a population of children followed up till their teens. Thus, an additional 37,000 CHD cases are diagnosed during childhood. Every year, about 121,000 children with CHD reach the age of 15 years. Of these, one-third would require long-term follow-up. Every year, nearly 50,000 children require surgery or care at an advanced infant cardiac center; however, every child who needs surgery in India does not get operated [24]. A large number of children with CHD who do not receive operations due to financial reasons live a difficult life with recurrent episodes of heart failure and failure to thrive. The resources are not only limited but also are at times improperly utilized. There are very few specialized pediatric cardiology training programs, those programs that do exist are concentrated in certain regions of India and are often imparted through combined adult and pediatric programs. Above all there is no national policy for pediatric heart care. Pediatric palliative care is a developing area in India. Specialised services for children are rare in the country. Very few institutions are providing specialised palliative care to children suffering with life limiting illness. For the average family the cost of care of a child with heart disease is prohibitive because care of children with heart disease often requires considerable human and material resources, together with sophisticated technology. According to the statistics available from pediatric palliative care services across the country it is clear that these services are helpful for patients and their families who are dealing with a tough time. Statistics reveal that in all places where these services are available the number of patient dropouts is less and the patient survival rate has gradually increased. Pediatric palliative care services help patients and their families by reducing patient pain levels, by providing support to patients and their families facing a difficult period, by assisting patients to continue treatments, and by increasing patient survival rates and reducing dropouts in cases where patients need long term treatment [25]. 98 L. Mathews and K.S. Kumar

Neurologically Handicapped Children There are no national studies about the prevalence of neurologically handicapped children in India. In a survey conducted in North West India, the prevalence rates for various common neurological disorders were: epilepsy 2.47/1,000; stroke 1.43/1,000; paralytic poliomyelitis 2.18/1,000; mental retardation 2.09/1,000; deaf mutism 1.63/1,000, and cerebral palsy 1.24/1,000. The prevalence among pediatric populations is expected to be much higher [26]. A similar study in Jammu showed a total of 11 cases of cerebral palsy yielding a crude prevalence rate of 2.27/1,000 in the age group of less than 10 years [27].

HIV/AIDS There are an estimated 200,000 children with HIV who are under 15 years old in the country, while some 50,000 to 60,000 children are born with HIV each year, according to National AIDS Control Organization (NACO) estimates. Pediatric HIV does not make up a large portion of HIV in India, approximately 4%. Although this sounds like a small percentage this corresponds to almost 30,000 newly infected infants each year. The percent of children of all ages who are receiving antiretroviral therapies (ART) that need to have ART is also approximately 4%. However, there are no estimates of the number of children who have been orphaned by AIDS, which is itself a telling comment of how this enormous human, social and psychological problem has been neglected. Children orphaned by AIDS can be stunted in their growth – often physically and certainly socially [28]. In October 2005, President Abdul Kalam launched the Unite Against AIDS Campaign for Children, with pledges to protect this vulnerable age group. The government has ﬁnally recognised this need, with a National Pediatric HIV/AIDS Initiative. This campaign, spearheaded by NACO, will provide free child-speciﬁc dosages of life-saving antiretroviral drugs, which have till now only been available in adult does to children above 9 years old.

Chronic Kidney Disease The magnitude of CKD varies from one geographical area to another due to genetic and environmental factors. In the absence of a national registry, the exact incidence and burden of CKD in children in India is not known. Data from India suggest a prevalence of CKD of 0.8–1.4% in urban areas, although this is likely a signiﬁcant underestimate given the absence of a kidney disease registry in India and low rates of screening for CKD. In a study conducted in an institution with a dedicated pediatric nephrology unit, the patient load of kidney disease in children was approximately 8–10% of total outpatient attendance and 12% of admissions to the pediatric ward. The commonest diagnosis for which children are likely to see a pediatric nephrolo- gist is nephrotic syndrome, constituting almost 40% of cases. Almost 10% of them are steroid resistant, and would require constant medical care. Nephrotic syndrome being so common, such children constitute a large burden of children with CKD. 7 Pediatric Palliative Care in India 99

Urinary tract infection is another problem commonly associated with renal outflow obstruction or a reflux [29]. In another study, 58% of children with renal failure had end stage renal disease at presentation [30]. A substantial percentage of the pediatric CKD population develops renal insufficiency very early in life but may not receive medical attention. The global incidence of chronic kidney failure in children is 5 per million children (under the age of 12 years) per year. If this incidence rate is extrapolated to the Indian population, the number of children with chronic renal problems approaches large numbers owing to India’s relatively young population [31].

Diabetes Mellitus India has a high prevalence of diabetes mellitus and the numbers are increasing at an alarming rate. Studies have shown that the prevalence of diabetes in urban Indian adults is about 12.1%, the onset of which occurs about a decade earlier than their western counterparts [32]. Furthermore, the prevalence of Type 2 diabetes is four to six times higher in urban than in rural areas. Once diabetes is diagnosed, adequate treatment requires a signiﬁcant amount of resources for patients and access to medications [32]. There is, however, a paucity of data on the prevalence of diabetes mellitus amongst Indian children. Studies have shown the prevalence of abnormal glucose tolerance to be 24.8% amongst overweight and obese children in the 5–18 year old age group [33], roughly indicating the burden of diabetes mellitus among children. Once identiﬁed, these children need help and support to improve the quality of their life.

7.2 Palliative Care in India

India ranks 171st out of 175 countries in the world for public health spending. For a country of one billion, India spends 5.2% of the GDP on health care. While 4.3% of GDP is spent by the private sector, the government continues to spend only 0.9% on public health. There has been growth in GDP but there exists no increase in health care spending. The inadequate public health care spending has forced public to depend on the private sector. India’s National Rural Health Mission is undeniably a government initiative that has put public heath care at the forefront. But where does it stand in the face of poor national health indicators? India’s health scenario currently presents a contrasting picture. While health tourism and private health care are being promoted, a large section of the Indian population still lives with the risk of curable diseases that do not receive ample attention of policymakers. This is the reason for economists to comment that “when the economic growth index is moving forward, the wellness index is dipping”[34]. Such is the reality that we cannot expect the government to pump in money for palliative care. 100 L. Mathews and K.S. Kumar

7.2.1 History of Palliative Care Services

Palliative care has been developing in India since the mid-1980s, but there is a dearth of evidence about service provision on which to base national policy and practice. There are 138 hospice and palliative care services in 16 states and union territories. These services are mostly concentrated in large cities, with the exception of Kerala, where they are much more widespread. Nongovernmental organizations, public and private hospitals, and hospices are the predominant sources of palliative care provision. Surprisingly, no palliative care services exist in 19 states and union territories. Development of services is unevenly distributed, with greater provision evident in the south than the north; however, for the majority of states the coverage is poor [35]. Most countries in the developing world are experiencing health transitions with a rapidly rising burden of chronic and incurable diseases. In India, in 2005, chronic diseases accounted for 53% of all deaths. Long term care for such patients is emerging as a major health care issue. With a crude death rate of 8.28/1,000 and a population of more than a billion, the total number of people dying every year in India is about 9 million. Currently there are some 5 million people in need of palliative care in India. They include those suffering from incurable and systemic diseases like AIDS, cancers, those suffering from spinal injuries or those who have had a stroke and age-related illnesses. Less than 1% of those who need palliative care services have any access to such care. In addition to the challenges posed by illnesses, many of the patients in India are extremely poor and do not have access to clean water, food or even shelter. When chronic or life-threatening illnesses strike it is a crippling blow for them and their families. There is therefore a crucial need for a system of care at home that can best be built by a community-based palliative care movement. In Kerala the model evolved after the Pain and Palliative Care Society was set up at the Institute of Palliative Medicine in the grounds of the Government Medical College at Kozhikode. The Institute offered home-care services as an extension of the out-patient clinic but it soon became apparent that the model was not adequate to reach out to the thousands of patients in need. Besides, such a model could only provide biomedical relief but could not take care of the complex social, spiritual and emotional issues which patients and their families faced. The meaning of palliative care has grown and now encompasses far more than its earlier deﬁnition of providing pain relief. WHO and other international organizations lay emphasis on providing physical, psychosocial and spiritual care to help patients achieve quality of life and to support families. It was to address such needs and so provide holistic care that the concept of friendly neighbours trained in palliative care took shape, leading to the formation of the Neighbourhood Network of Palliative Care (NNPC) in 2001. Trained volunteers help to care for some 2,500 patients each week and to provide hugely-needed emotional support. Sometimes the volunteers raise funds within the community to assist patients improve their quality of life, such as buying a water bed to help prevent bed sores. It is the massive involvement of the local community that has made this palliative care program such a success and has enabled it to be cited by the WHO as a model for developing 7 Pediatric Palliative Care in India 101 nations. Kerala is the only state where the National Rural Health Mission has taken up palliative care and appointed the Institute as the nodal agency where volunteers are trained. After training, volunteers in the NNPC assume central roles. They provide comprehensive care to patients and improve symptom control by ensuring compliance with treatments, providing free medications, and determining side effects. Volunteers do not give medical advice or perform medical procedures but help in procuring prompt medical assistance. Since 2001 the NNPC has grown rapidly and with the support of the state government and various local self government institutions like panchayats and gram sabhas it has set up a network of 230 clinics with more than six full-time doctors, auxiliary nurses and trained volunteers in all of Kerala’s 14 districts.

7.2.2 Barriers to the Development of Palliative Care Services

Even in Kerala, where NNPC has grown rapidly, only around 40% people have access to palliative care services. This is exceedingly good when compared with the national standard of less than 1%; however, there are certain barriers to the development of a comprehensive palliative care system in India. Barriers include:

• Very few trained personnel. In this respect Kerala is unique because the Government of Kerala has recently declared a Palliative Care Policy that highlights the need for integrating palliative care with primary care. Through the palliative care policy initiated by the national Rural Health Mission, there is a provision to train doctors and paramedical staff in palliative care. • Availability of opioids. Rules regarding dispensing of opioids are very strict. Modiﬁcation of the Narcotic Drugs and Psychotropics Substance Act to enable easy medical use of morphine has not happened in most of the Indian states. • City-centred palliative care centres. All over India, excluding Kerala, palliative care centres have developed in and around cities and towns. This is very important considering that 72.2% of the Indian population lives in 638,000 villages. • Lack of palliative care health policy. Palliative care has not yet been accepted as part of health system except in Kerala where the palliative care policy has been adopted. • Cancer-centred. In most of the centres in India, again with the exception of Kerala, palliative care services are restricted to those patients with cancer.

7.3 Palliative Services for Children

Considering that less than 1% of needy people have access to palliative care services and there are barriers to the development of these services, it will be a long time before pediatric palliative care assumes importance in India. Apart from the barriers 102 L. Mathews and K.S. Kumar for the development of palliative care services outlined above, there are certain other matters which are speciﬁc to the development of pediatric palliative care in India. Additional barriers to the development of pediatric palliative care services include:

• Not only laypeople but also health care professionals equate palliative care with terminal care. The concept of palliative care among children itself is lacking, and so children with life limiting illnesses are often not initiated into palliative care services even if there happens to be one in the vicinity. This is because parents are scared to initiate children into palliative care under the misconception that death of their child is imminent. • Parents go all out for curative therapy. One reason for parents’ pursuit of curative therapies is the uncertainty surrounding the prognosis of children with life limiting illnesses. Typical examples are for children with leukemia and nephrotic syndrome. In the West, tailored treatment is given for these diseases with very good prognosis and rates of cure. This is not the case in India. Apart from a few tertiary centres, the cure rate for leukemia is just around 20–30%; but parents of these children continue with the available treatment nonetheless. They are not willing to access palliative care services under the misconception that the treating doctor has “given up“. • From the parents’ perspective the most visible palliative care services exist for adults with chronic progressive illnesses that ultimately end in death. The truth is they are not ready to accept this fate for their child. Unlike in the West, the notion of adding quality of life to a child’s life rather than adding years to a child’s life is yet to become popular in India. • The most common symptom among children with life limiting illnesses, pain, is mostly under assessed and under managed. The misconception that opioids are too strong for children, fear of side effects, worry that their children will become addicted, worry that opioids will cut short their child’s life span, concerns that escalating opioid doses will increase the likelihood of tolerance and thus make pain control more difﬁcult as the disease progresses- all make parents hesitant to access palliative care centres. • Pediatric palliative care programs are often only attached to pediatrics departments of major hospitals. It has not yet evolved into institutionalized service and therefore palliative care services are often under estimated.

7.3.1 What Is Happening in India?

The existence of these barriers does not mean there are no palliative care services for children.

7.3.1.1 Pediatric Palliative Care Program – Trissur, Kerala As in the case of adults, palliative care started with the care of children with cancer. One such example is the We Care Charitable Trust, started in 2001, that is attached 7 Pediatric Palliative Care in India 103 to the Department of Pediatrics, Medical College, Trissur in Kerala. It all started when 10-year old master Suraj (name changed) was admitted to hospital with acute leukemia. He had lost both his parents in rather unfortunate circumstances and was brought for medical help by his aged grandmother. During the induction of remission with chemotherapeutic agents, his condition deteriorated and he needed very costly drugs to combat the situation. Because the grandmother could not afford the costly treatment, we approached an entrepreneur known for his philanthropic attitude to help out Suraj. Not only did the benefactor help us to tide over the crisis, but he also helped us to start a program to cater to the needs of children with cancer. The initial fund collection was through sale of tickets for a musical program. The interest from the corpus fund collected was used to buy the necessary drugs needed. Seeing the improved prognosis of the children treated, gradually the cash flow to the program increased. The next step we took was to go beyond pure curative therapy. We started doing small things to improve the quality of life of these children like setting up a play room, taking the kids for outings, celebrating their birthdays, and so on. We also started organizing the “Leukemia Family Meet” on Deepavali day every year. Deepavali is the Festival of Lights celebrated all over India. Being a holiday, the patients (past, cured and on treatment) as well as their family members are free to attend the get together function. We have had 12 such get togethers so far. The patients also look forward to this day, because it is their chance to reunite years after having suffered through the disease. At all these get togethers, one permanent item is a dance number by the very same Suraj who was instrumental in setting up this program. Needless to say, he has now matured into a very good break dancer. Though the program was started for childhood cancer, over the years it has evolved into a program to extend support to children with other chronic diseases, such as renal diseases, diabetes, thalassemia, HIV infection, developmental disability, and so on. By 2007, the hospital administration was in a position to make chemotherapy available to patients. Later, the Government of Kerala also initiated schemes such as the Cancer Suraksha Scheme and the Thalolam Scheme (an off shoot of Kerala Social Security Mission) that provided drugs worth up to Rs 50,000/per patient/year [36]. For the past few years the We Care Charitable Trust has been able to go beyond the provision of drugs and has begun to offer additional benefits like counseling services and upgrading the playroom attached to the leukemia and chronic diseases’ ward. Now the Trust helps in finding sponsors to support the educational needs of the cancer survivors.

7.3.1.2 C4CCCI – Caring for Childhood Cancer and Chronic Illnesses Program – Calicut, Kerala The success of our Trissur venture made us think about starting a similar program in Calicut that would be attached to the Pediatrics Department, Medical College, Calicut in Kerala. A support group- C4CCCI – was started in 2007. The initial fund collection was arranged at a function attended by a popular ﬁlm star wherein some of the well known business houses made good donations that led to the formation 104 L. Mathews and K.S. Kumar of the corpus fund. As in Trissur, the initial thrust was on making chemotherapy drugs available for leukemia children. Gradually we also started supporting the transportation expenses of these children for their multiple hospital visits during the various phases of their treatment. Every time an admitted child’s birthday falls during the hospital stay, we arrange for a birthday cake to be cut and distributed among the patients and their family. Some teachers from the nearby schools at times come and spend time with the patients and also give them non-formal education, because we ﬁnd these children miss out on going to school because of their illness. Though the program was started for children with cancer, gradually children with other chronic illnesses like Thalassemia, Hemophilia, and Nephrotic syndrome are being taken care of. Because the Government of Kerala, through the Cancer Suraksha Scheme and the Thalolam Scheme, are supporting drugs worth Rs 50,000/year/patient, the funds collected by the support group can now be used for non medical expenses. Another spin off of starting such support groups is that much better pain management is made available for children.

7.3.1.3 Pediatric Palliative Care Program – Hyderabad As part of its Comprehensive Pediatric Oncology program the MNJ Institute of Oncology and Regional Cancer Center in Hyderabad initiated the Pediatric Palliative Care Program in July 2009. As a result there is now a dedicated palliative care program for children with cancer. The program is run with the help of International Network for Cancer Treatment and Research funding and it has one doctor and two social workers dedicated to the program, supported by the parent Palliative Care Department. The highlight of the program is enrollment of all children availing cancer care from early on into the palliative care program and the availability of procedural-related pain relief. The primary goal of the program was to provide the best possible care for all terminally ill children both in the in-patient and out-patient settings. The program is supported by Natco Trust which provides the salary support for two counselors and medications required for the children. In the past, any terminally ill child was sent home with the message that nothing further could be done at MNJ and it was best to take the child home. The staff had no idea regarding the problems the discharged patients faced or the care they received prior to death. With the help of counselors, now the system provides follow up in the case of every child and provides emotional and symptomatic support to some. The support for the patient is now around the clock. During the ﬁrst 6 month period, the program saw a total of 988 children visits and the morphine consumption, which is a direct indicator of any pain relief program, was approximately 59 gms. Ten support group meetings were conducted. The patient drop out decreased signiﬁcantly and the overall compliance to treatment improved. The patients and the families are better prepared to undergo the process of such extended treatment and even to face occasionally the unfortunate events of death. 7 Pediatric Palliative Care in India 105

7.3.1.4 Pediatric Palliative Care Program – Mumbai The Palliative Care Services Unit was established in the Tata Memorial Centre, Mumbai in 1996. In 1998 the Home Care Services was launched and in 2002, Pediatric Palliative Care Services unit was added to the services of the unit. Young children with cancer are treated to keep them pain free and active. The Unit comprises dedicated doctors, nurses, psychologist, social workers and volunteers and provides free medical, nursing and psychosocial care for patients as well as bereavement support. The Pediatric Palliative Care Services unit now raises funds to help with the education of these children. This is because young children are very often pulled out of school as the family cannot afford to educate them and older children have to seek petty employment to add to the family income. In 2009, 102 children have been given ﬁnancial assistance for school, college and vocational education.

7.3.1.5 Pediatric Palliative Program – New Delhi CanKids...KidsCan, member of the International Confederation of Childhood Cancer Parent Organisations, is an NGO under the umbrella of the Indian Cancer Society in Delhi that works towards enabling children faced with cancer. Since its existence, there is a very active Children’s Program including activity clinics at hospitals, group outings, medical and educational assistance, and celebration of festivals, National Days and birthdays.

7.3.1.6 Support Groups for Children with Hematological Problems Similarly if we look at children with hematological problems, there are specialized non-government organizations that support these disorders specifically. No more than 5–10% of thalassemic children born in India receive optimal treatment. Stem cell transplantation as a curative treatment, which costs between 6 and 16 lakh rupees is out of question for most thalassemia patients. There being no positive cure for thalassemia, the case management depends solely on palliative repeated blood transfusions; thus imposing a huge burden on the health system and on the financial status of the affected families. The mental agony experienced by the affected families cannot be quantified or perceived by those who do not experience the trauma themselves. The government teaching hospitals, in spite of being tertiary level referral hospitals in states, have to serve people from all socioeconomic strata and have to cater to all sorts of ailments ranging from the simplest infections to highly complicated chronic illnesses. Thus the hospitals are often over-crowded and the staff is over-burdened to offer repeated counseling and sustained motivation to parents of children suffering from genetic disorders. However, the statistics highlight the need for palliative care for this group of children [37]. Families of thalassemic children undergo huge suffering and pain, including the pain of watching the child get repeated transfusions, iron overload and retarded growth, and huge expenses. The thalassemic child needs blood transfusion as 106 L. Mathews and K.S. Kumar routine (once in 3–4 weeks) and in almost all cases the disease proceeds to a slow and painful death by 10–20 years of age. If they get good quality blood product, thalassemic children can survive longer. Thalassemia continues to shatter many families both financially and emotionally. There are blood centres run by NGO’s whose efforts are always directed to providing thalassemia patients with high quality blood components that their bodies can easily accept and respond to. Because of this support, the catch word to these children is “Don’t worry. There is someone to take care. Always!”

7.3.1.7 Neurologicallly Handicapped Children A voluntary organization based in Chennai, Vidya Sagar works with children and young adults who are afﬂicted with cerebral palsy and other neurological disabilities, along with their families, communities, and the society at large. This organization caters to the needs of more than 3,000 families having children with chronic neurological problems. This program started as the Spastic Society of India concentrating on children with cerebral palsy and later evolved into a set up catering to the needs of children with chronic neurological problems. The following inferences can be drawn from our experience:

• Most if not all pediatric palliative care services have started with the care of childhood cancer. Gradually these programs evolve into centres providing care for children with life limiting illnesses. • Certain NGO’s who are particularly interested in a speciﬁc group of children (e.g., Thalassemia, SCD, Cerebral Palsy, etc) are giving not only treatment help but also expanding to address the social and psychological needs of these children.

7.3.2 Conclusion

Though palliative care was initiated in India a quarter of a century back, it is still in its infancy except in Kerala. Despite the existence of large numbers of children with LLI, pediatric palliative care still remains under developed. Still the picture is not entirely gloomy considering what is happening in different parts of India. Availability and access to pediatric palliative care will become a reality only in those areas where primary health care and palliative care are well developed.

References

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4. Ram M (2011) Pioneers of ayurveda. Hubpages. http://hubpages.com/hub/PIONEERS-OF- AYURVEDA. Accessed 2011 5. FAQS.org (2011) Information on Ayurveda: Sushruta. Faqs.org. http://www.faqs.org/health/ topics/50/Sushruta.html#ixzz1BVFYK6RM. Accessed 2011 6. National Health Policy (2011) National Health Policy. http://mohfw.nic.in/np2002.htm. Accessed 2011 7. Raman AV, Björkman JW (2004) Public/private partnership in health care services in India. MedIND journal. http://medind.nic.in/haa/t08/i1/haat08i1p62.pdf 8. Healthcare in India. Wikipedia. http://en.wikipedia.org/wiki/Healthcare_in_India. Accessed 2011 9. Medical industry diagnosis: triage for health care and new vision for life science. http:// knowledge.wharton.upenn.edu/india/article.cfm?articleid=4277. Accessed 2011 10. Lacking healthcare a million Indians die every year. Economic Times. http://economictimes. indiatimes.com/Healthcare/Lacking_healthcare_a_million_Indians_die_every_year_Oxford_ University/articleshow/4066183.cms. Accessed 2011 11. Country health system profile: India. World Health Organization. http://searo.who.int/EN/ Section313/Section1519_10852.htm. Accessed 2011 12. Country profile: India. Health of Nations. http://www.healthofnations.com/countries/profile/ india. Accessed 2011 13. Kulkarni S (2003) India sector paper: health overview and prospects. Centre for Media Studies, New Delhi (submitted to Asian Development Bank) 14. Ghosh S, Arokiasamy P (2011) Morbidity in India trends, patterns and differentials. Journal of Health Studies/II/2009 http://www.indianetzone.com/5/demographies_india.htm. Accessed 2011 15. National Family Health Survey, India. (2011) http://www.nfhsindia.org/nfhs3.shtml. Accessed 2011 16. Arora RS, Eden TO, Kapoor G (2009) Epidemiology of childhood cancer in India. Indian J Cancer 46(4):264–273 17. President’s page (2007) Prevention of Thalassemia in India. Indian Pediatr 44 18. Verma IC, Choudhry VP, Jain PK (1992) Prevention of thalassemia: a necessity in India. Indian J Pediatr 59:649–654 19. Manglani M, Lokeshwar MR, Vani VG, Bhatia N, Mhaskar V (1997) ‘NESTROFT’ – an effective screening test for b-thalassemia trait. Indian J Pediatr 34:703–708 20. Awasthy N, Aggarwal KC, Goyal PC, Prasad MS, Saluja S, Sharma M (2008) Sickle cell disease: experience of a tertiary care center in a nonendemic area. Ann Trop Med Public Health 1(1):1–4. doi:10.4103/1755-6783.43069 21. Kamble M, Chatruvedi P (2000) Epidemiology of sickle cell disease in a rural hospital of central India. Indian J Pediatr 37:391–396 22. Yadav R, Gupta RB, Bharadwaj VK, Singh (2011) MPSS Morbidity profile of sickle cell disease in central India. Proceeding of national symposium on tribal health. www.rmrct.org/ files_rmrc_web/centre%2. Accessed 2011 23. Kumar RK, Shrivastava S (2008) Paediatric heart care in India. Heart 94:984–990. doi:10.1136/hrt.2007.139360 VR 24. Grover A, Vijayvergiya R, Shyam TT (2002) Burden of rheumatic and congenital heart disease in India: lowest estimate based on the 2001 Census. Indian Heart J 54:104–107 25. Saxena A (2005) Congenital heart disease in India: a status report. Indian J Pediatr 72(7): 595–598 26. Razdan S, Kaul RL, Motta A, Kaul S (1994) Prevalence and pattern of major neurological disorders in rural India. Neuroepidemiology 13(3):113–119 27. Raina SK, Razdan S, Nanda R (2010) Prevalence of cerebral palsy in children < 10 years of age in R.S. Pura town of Jammu and Kashmir. J Trop Pediatr. doi: 10.1093/tropej/fmq095 28. Sehgal UK, Baveja D, Chattopadhya, Chandra J, Lal S (2005) Pediatric HIV infection. Indian J Pediatr 72(11):925–930 108 L. Mathews and K.S. Kumar

29. Kanitkar M (2009) Chronic kidney disease in children: an Indian perspective. MJAFI 65: 45–49 30. Gulati S, Mittal S, Sharma RK, Gupta A (1999) Etiology and outcome of chronic renal failure in Indian children. Pediatr Nephrol 13:594–596. 31. Hospital News and Patient Education: do you know? NU Hospitals. http://www.nuhospitals. com/fdoyouknow.php. Accessed 2011 32. Mehta SR, Kashyap, AS, Das S (2009) Diabetes mellitus in India: the modern scourge. MJAFI 65:50–54 33. Kaur S, Kapil S (2010) Impaired glucose tolerance and diabetes mellitus in obese children correspondence. Indian J Pediatr 47:363 34. Nagaraj NM (2009) India ranks 171 out of 175 in public health spending, says WHO. The Times of India. http://timesoﬁndia.indiatimes.com/india/India-ranks-171-out-of-175- in-public-health-spending-says-WHO-study/articleshow/4879566.cms#ixzz1AK4ngP8X. Accessed 2011 35. McDermott E, Selman L, Wright M, Clark D (2008) Hospice and palliative care development in India: a multimethod review of services and experiences. J Pain Symptom Manage 35(6):583–593 36. Kerala Social Security Mission. http://socialsecuritymission.gov.in/index.php?option= com_content%view=article%id=62%Itemid=62. Accessed 2011 37. Bandyopadhyay B, Nandi S, Mitra K, Mandal PK, Mukhopadhyay S, Biswas AB (2003) A comparative study on perceptions and practices among parents of thalassemic children atending two different institutions. Indian J Community Med 18:128–132 Chapter 8 Pediatric Palliative Care in Malaysia

Ednin Hamzah and Geok Lan Kuan

Abstract For children with life-limiting illnesses (LLI) in Malaysia, access to pediatric palliative care (PPC) will make improvements to their quality of life. Despite limited incidence data available for children with LLI, apart from cancers, there are initiatives to provide PPC in hospital and the community. The hospital remains the clinical area most responsible for the delivery of PPC, and is also where the majority of children die. Some hospitals due to increasing need have initiated community based supports, but these programs while already limited are primarily directed to children with a terminal cancer diagnosis. Community based programs are usually provided by pediatricians, while in hospital palliative services are generally managed by adult care teams. Research in pediatric palliative care is limited, but interested in the area is gaining momentum. However, with increasing awareness and increasing opportunity in training in palliative care, it is hoped that further improvements will take place in the future.

Keywords Malaysia · Pediatric · Palliative care · Cancer · Culture · Community service · Symptoms · Standards · Experience · Hospice · Hospitals · Training · End of life care

8.1 Introduction

Malaysia is often portrayed as a tropical paradise and a commonly used slogan used for promoting tourism is ‘Malaysia, truly Asia’. It encapsulates a country which is situated between 2◦and 7◦ to the North of the Equator and populated by 25,424,000 people (2009) with varied cultural backgrounds. A young nation gaining its independence in 1957, the country consists of a peninsula with 11 states, linked to Thailand on its northern border and two states which occupy a third of the island of Borneo which borders Indonesia and Brunei (Fig. 8.1). The country covers an area of 329,959 km2 with a combination of coastal terrains and inland, jungles and mountains. Kuala Lumpur (population approximately 1.9 million) is the national capital.

E. Hamzah (B) Hospis Malaysia, 56100 Kuala Lumpur, Malaysia e-mail: [email protected]

C. Knapp et al. (eds.), Pediatric Palliative Care: Global Perspectives, 109 DOI 10.1007/978-94-007-2570-6_8, C Springer Science+Business Media B.V. 2012 110 E. Hamzah and G.L. Kuan

Fig. 8.1 Malaysia

Malaysia has a multi ethic population with Malays comprising 57% of the population with Chinese, Indians, Indigenous races and others making up the rest. Islam is the main religion; however, Buddhism, Christianity, Hinduism and other faiths are also prevalent. Bahasa Malaysia is the national language but English, various Chinese dialects and Tamil are also commonly heard. The various beliefs and traditions of this myriad population create a wide cultural diversity that has implications in the delivery of healthcare.

8.2 The Pediatric Population

Children (up to 18 years old) account for 37.3% of the population (9,595,000). Malaysia has an infant mortality rate of 6.4/1,000 live births (2008) and a current life expectancy at birth of 76 years for women and 72 years for men (Table 8.1). Currently no database exists for children with life limiting illness (LLI) except for cancer as seen in Fig. 8.2 [1]. The most frequent cancer reported in children is leukemia. The most frequent pediatric oncology patients requiring palliative care are those diagnosed with relapsed leukemias, bone tumors, retinoblastoma, and neuroblastoma. Using population data bases it can be crudely estimated that approximately 9590 children in Malaysia will be diagnosed with a LLI each year. 8 Pediatric Palliative Care in Malaysia 111

Table 8.1 Population of Malaysia 2009 (Department Age (years) Total % of total population of Statistics, Malaysia) 0–5 2,849,200 11.2 6–9 2,061,200 8.1 10–14 2,650,700 10.4 15–18 2,028,900 8.0 All children 9,590,000 37.3 19–80+ 15,834,300 62.3 Total (all ages) 25,424,000 100

Fig. 8.2 Ten most frequent cancers in males by age groups, Peninsular Malaysia 2006: Age 0–14 years old

Data describing mortality for under 5 years [2] illustrates that the vast majority of children die in the hospitals (Table 8.2). The four common classiﬁcations of causes of death are from a broad diagnostic mix (Fig. 8.3). They include: congenital malformations, deformations and chromosomal abnormalities, certain infectious and parasitic diseases, diseases of the respiratory system, injuries, poisoning and other external causes. Within the classiﬁcation of congenital malformations, deformations and chromosomal abnormalities, 39.7% were congenital heart disease, 24.6% syndromes, 12.0% gastrointestinal system malformations and 10.6% central nervous system malformations. Under the infectious and parasitic disease group, 19 deaths were from HIV. 112 E. Hamzah and G.L. Kuan

Table 8.2 ICD 10 Classiﬁcation of causes of under 5 death by place of death, Malaysia 2006

Place of death Hospital deaths Non hospital deaths Overall ICD classiﬁcation of cause of death No % No % No %

Certain infectious and parasitic 253 19.4 67 16.9 320 18.8 diseases Neoplasms 61 4.7 2 0.5 63 3.7 Diseases of blood and immune system 23 1.8 1 0.3 24 1.4 Endocrine, nutritional, metabolic 108 8.3 8 2.0 116 6.8 diseases Diseases of nervous system 126 9.7 14 3.5 140 8.2 Diseases of circulatory system 36 2.8 2 0.5 38 2.2 Diseases of respiratory system 149 11.4 72 18.2 221 13.0 Diseases of digestive system 23 1.8 12 3.0 35 2.1 Diseases of genitourinary system 6 0.5 1 0.3 7 0.4 Conditions from perinatal period 61 4.7 15 3.8 76 4.5 Congenital malformations, 366 28.1 60 15.2 426 25.1 deformations and chromosomal abnormalities Injuries, poisoning and external causes 68 5.2 60 15.2 128 7.5 Symptoms, signs and abnormal 7 0.5 57 14.4 64 3.8 ﬁndings, necrotizing enterocolitis Others 16 1.2 25 6.3 41 2.4 Total 1303 100 396 100 1699 100

450 400 350 300 250 200

No of Death 150 100 50 0 Sign CNS

ENM Injury Other &

Infection Perinatal Neoplasm Congenital Genitourinary Digestive System Symptoms Circulatory System Respiratory System Blood & Immune System

Hospital Death Non-Hospital Death

Fig. 8.3 ICD 10 classiﬁcation of causes of under 5 death by place of death, Malaysia 2006 8 Pediatric Palliative Care in Malaysia 113

8.3 Provision of Services

Malaysia has a Gross Domestic Product (GDP) per capita of $7030.00 USD (2009) and is classed as an upper middle income country by the World Bank. Healthcare expenditures are estimated at 4.4% of GDP (2007). Comprehensive healthcare services are provided by the Ministry of Health which runs in parallel to a private insurer health system. Of note, health insurance policies are voluntary but there may be limitations in the coverage for critical and life limiting illness. The Ministry of Health runs public and primary health care services both in hospital and community. The former delivers primary care via home visits and the health centers i.e. community clinics, polyclinics in rural areas, run by medical ofﬁcers assisted by a full time team comprised of pharmacists, medical assistants, midwives and community nurses. The focus in community settings is maternal and child health with the integration of the following ﬁve areas:

1. Management of children with special needs 2. Adolescent health 3. Mental health 4. Wellness clinic 5. Health of senior citizens.

Categories for Government hospitals include:

1. Non specialist hospitals 2. Minor specialist hospitals 3. Major specialist hospitals 4. Hospital Kuala Lumpur and all state hospitals 5. Special medical institutions (e.g. the National blood bank, Respiratory Medicine Hospital)

Healthcare and palliative care delivery is complicated by the myriad of cultural and traditional belief systems within the Malaysian population. Further alongside the mainstream public and private healthcare system is a whole plethora of Malay, Chinese and Indian traditional healers. With the impact of these and other forms of complementary/traditional medicines gathering more acceptance in the mainstream population, the Ministry of Health has provided opportunities for these alternative forms of medicine to be implemented within their hospitals.

8.4 Hospital-Based Pediatric Palliative Care

Palliative Care began first for adults in Malaysia in 1991, initiated by Non-Government Organizations (NGOs). These services were community based and it was only in 1995 that the first hospital based Palliative Care Unit was 114 E. Hamzah and G.L. Kuan established at the Queen Elizabeth Hospital in Kota Kinabalu, Sabah. In 2000, the Ministry of Health recognized the importance of palliative care by initiating the development of a nationwide hospital based program. A career path was established for Adult Palliative Medicine by the Ministry of Health by recognizing it as a as a full medical subspecialty in 2005. Adult Palliative Medicine currently has its own separate budget, positions and a training structure [3, 4]. Although there are as yet insufficient trained physicians in charge of the 13 palliative care units and 48 palliative care teams developed throughout the entire country within categories 3 and 4 hospitals. Community services continue to depend on NGO services for funding and while educational programs exist for physicians there is currently no recognized system of training palliative care nurses. Pediatrics in Malaysia has advanced by leaps and bounds since the 1920s with the arrival of two British pediatrician pioneers, Cicely Williams (1936) and Elaine Field (1949), who were instrumental in the development of the curative services [5]. Currently, pediatrics has developed into 17 subspecialties etc. [6]. Since March 2009, younger pediatricians have been encouraged to consider pediatric palliative care as a special interest under the ‘Pediatrics and Child Health’ subspecialty. Unfortunately, there has been only one pediatrician in 2010, who is pursuing this option for training. Children diagnosed with LLI exist in all seventeen pediatric subspecialties and the spectrum of diagnoses can also be classified into four broad groups [7]:

1. Conditions where potentially curative treatment has failed (e.g. malignancy); Children in long term remission or following successful treatment are not included. 2. Conditions where intensive treatment may prolong life but premature deaths occur (e.g. cystic ﬁbrosis). 3. Progressive conditions where treatment is exclusively palliative (e.g. Duchene’s muscular dystrophy). 4. Non progressive neurological conditions which result in an increased susceptibility to complications and premature death (e.g. cerebral palsy).

Despite the severe limitations of trained pediatric specialists in PPC, those practicing in the subspecialties are doing their best to provide palliative services in state hospitals. There are of course variations among state hospitals in the provision of palliative care. Hospitals where a pediatrician has championed a special interest in pediatric palliative care services can be quite comprehensive. In this type of hospital clinical environment, coupled with strong community base or NGO support, such as the Sarawak Children Cancer Society (SCCS) which has a budget for palliative care, services are available for needy children as well as a bereavement support for the family. This comprehensive program provides services with a budget in the amount of RM3,000 (slightly under $1,000 USD). A major philosophical challenge for pediatricians currently is when to move to PPC from a curative treatment model. This dilemma would be minimized if PPC 8 Pediatric Palliative Care in Malaysia 115 was integrated within current medical curriculum [8]. At the current time pediatricians and healthcare professionals are feeling inadequate, are overworked with the needs of the population which is resulting in a signiﬁcant number of health care professionals suffering from burn out. In 2008, a local study directed to pediatricians concerning end of life care was conducted. Thirty-one pediatricians; 12 males and 18 females responded to the request and their working experiences varied from 2 to 26 years (Table 8.3). The majority of respondents (75%) felt that past clinical experience contributed signiﬁcantly towards their ability to care for dying children. Clinicians with less experience regarded themselves as less experienced in this aspect. The majority of pediatricians (61%) felt that support for staff was inadequate when working with terminally ill patients. The following table (Table 8.4) illustrates what were perceived as barriers in the end of life (EOL) care of their patients. The suggestions made to improve care for patients fall include the following:

1. Community Care to ensure that needs of children and families could be met in a home environment or a community hospice facility. 2. Training to include counseling skills, bereavement and guidelines for providing pediatric palliative care. 3. Improving hospital amenities and services such as appropriate space in hospital for grieving parents, improved pain relief and combined sessions for staff debrieﬁng.

Currently, care for the majority of children requiring PPC are in hospital managed by a pediatrician. Service areas would include outpatient and inpatient wards where

Table 8.3 Breakdown in experience of pediatricians Pediatric experience in years Number Percentage Less than 5 years 1 3 6–10 years 6 19 11–20 years 17 55 More than 21 years 7 23

Table 8.4 Pediatricians’ perceived barriers in providing end of life care

No. Barriers % Response by pediatricians

1 Inadequate time to discuss EOL issues 51.6 2 Felt inadequate in knowing what to say 41.9 3 Unsure if futile medical interventions should be stopped 50 4 Unsure of how to be helpful 50 5 Poor pain and other symptom control 56.5 6 Poor communication on the team 48.4 7 Differences of opinion as to plan of care 49.2 116 E. Hamzah and G.L. Kuan the vast majority of children would be receiving curative services. There are a few hospitals (e.g. Malacca, Perak, Sarawak) where an outreach model has been developed with a team approach which comprises pediatric outreach nurses, medical officers liaising with a pediatrician. Children in the terminal phases in these outreach programs are encouraged to stay in their homes with their families until death. In hospitals with no outreach programs, such as ours it has been our experience that many families prefer to have their children with neurological conditions, die in the hospital because of the uncertainty of the disease trajectory as well as lack of respite facilities such as a pediatric hospice. For many of the families, having their children admitted to hospital is itself a respite opportunity. However in recent years, a growing number of patients with SMA Type I have chosen to die at home following counseling. Since 2000 [3, 4], adult palliative care units (PCU) have been established in all government state hospitals. These units are established for adult patients >18 years of age, managed by a surgeon, physician or a palliative care physician if available. These units are frequently not utilized by pediatricians who often prefer to manage their own patients due often to the bonding resulting from the therapeutic relationships developed over time with the child and family. In states with strong community palliative care supports, some pediatricians are also reluctant to refer because they are very possessive of their patients and some are not able to accept that their patient is dying. Lack of knowledge, awareness of adult palliative care services and what exists in community agencies may further influence their attitude and hence that of the parents, about PPC [9, 10]. Pediatricians need to advocate for PPC by becoming more familiar with available services in their area including adult palliative care physicians. Much can be gained by cooperating and collaborating with the Adult Palliative Medicine specialist who bring particular skills including knowledge of community based services for the benefit of the family and patient [11]. In addition, pediatricians are in a position to positively influence the utilization of palliative care services by children and their families provided they have awareness and confidence in the services available.

8.5 Community Pediatric Palliative Care

Community based adult palliative care services historically in Malaysia have been initiated primarily by volunteers and supported by Non Government Organizations (NGOs) and charities. While these programs initially were run by volunteers over time these programs have gradually involved community nurses and to a small extent, palliative medicine physicians. A survey of the attitude of the 18 community palliative care services in 2011 demonstrates the following: 8 Pediatric Palliative Care in Malaysia 117

Table 8.5 Access for pediatric palliative care in the community

Organization Accept pediatric patients Remarks

Hospice Malaysia Yes All life limiting illness Pure Lotus Hospice of Compassion, Penang Yes All life limiting illness Kuching Hospice Cancer Care Yes All life limiting illness Palliative Care Association of Kota Kinabalu Yes All life limiting illness Penang Hospice Society Yes Only cancer patients Perak Palliative Care Society Yes Only cancer patients Hospice Klang Yes Only cancer patients Hospice Seremban Yes Only cancer patients Palliative Care Association of Johor Bahru Yes Only cancer patients Hospice Seremban Yes Only cancer patients Kedah Hospice Society No Charis Hospice, Penang No Taiping Palliative Care Society No Hospice Malacca No Sabah Cancer Society No Hospice Association of Sandakan No Tawau Hospice Society No Kasih Hospice No formal policy

Table 8.5 illustrates differences in access to community support in a variety of geographical locations. In addition to the age and disease criteria, many services have a limited area of coverage (e.g. 10 km from their base of operations). Although the Private Healthcare and Facilities Act of 1998, had included a provision for palliative care services which included the provision to improve standards in palliative care services, by and large the issue of quality and standards has yet to be addressed nationally. Thus whilst all the community palliative care services provide service at no charge, the services may range from simply social support, nursing care to a palliative care services including a multi disciplinary team with 24 h access to care. In some areas, as previously mentioned, hospital pediatric services may provide limited outreach community support service. Community PPC remains very much in its infancy in Malaysia with no national programs or a PPC policy framework. Nevertheless, several community palliative care services are forging ahead with their own plans which include the establishment of a community in-patient pediatric palliative care facility or a dedicated pediatric community palliative care service.

8.6 Local Programs

Although PPC services are very much in their infancy, there are pioneering programs that may serve as an example to others. What follows is an example of a patient care scenario at the Malacca General Hospital prior to their commitment to developing PPC programs. 118 E. Hamzah and G.L. Kuan

• HBO was a 4-year old boy who presented for the ﬁrst time, for admission. He was gravely ill with rapid breathing, pallor for 2 days as well as bleeding from his right eye for 1 week. A diagnosis of Right retinoblastoma was made 6 months prior by a private ophthalmologist in an adjacent state. His parents refused surgery, and HBO was kept at home. On admission, HBO was in respiratory distress, severe metabolic acidosis with dropping oxygen saturation. He was extremely pale. His right eyeball was protruding and the cornea crusted. There was also a left corneal opacity. • This being his ﬁrst presentation to the pediatric department, the pediatrician gin- gerly asked the father what he wanted the team to do. At this, the angry retort was “I want what is best for my son!” • A referral was promptly made for intensive care, with the ophthalmology and intensive care teams called in. HBO was ventilated and stabilized. In addition to a transfusion of two pints of blood, HBO was given 10 different intravenous drugs, a battery of blood investigations, two chest x-rays and a Computerized Tomogram of the orbit. • The following morning, father claims, there were no complaints of pain, headache or vomiting and they now wanted to take their son home. • This case illustrates that with better guidelines for PPC, HBO and his family could have enjoyed a better quality of life. Palliative care options and support could have been offered at home via better coordination of care between the private hospital and the local pediatrician, as well as NGOs in the community.

Fig. 8.4 Pediatric palliative care meeting with the core team 2.4.2008 8 Pediatric Palliative Care in Malaysia 119

Fig. 8.5 Home visit made by the outreach pediatric team: ﬂushing of logline and review of symptoms

PPC has improved in the Malacca General Hospital with the development and implementation of a framework of care [12]. A number of strategies have been developed such as the training of a core team responsible for home visiting, as well as collaborating with the local hospice nurse (Hospice Malacca) scenarios such as the one previously presented are less frequent. Over a 3 year period, the level of documentation of physical (21.4 to 31.2 to 85%) and psychosocial support (28 to 37.5 to 85%) in the end of life care of patients has improved. Equally important was the depth of the support shown in these two areas. The results illustrate that with the implementation of a PPC policy and strategy, the quality of the end of life care of our Malaysian children can and will be improved (Figs. 8.4 and 8.5).

8.7 Hospice Malaysia

One of the ﬁrst community palliative care services in Malaysia, Hospice Malaysia adopted a different strategy from other mainly volunteer based services by developing a core clinical multidisciplinary team with palliative care physicians, nurses, occupational therapist and others providing a 24 h on call access to care. From the 120 E. Hamzah and G.L. Kuan start, it allowed the referral of any patient with LLI including pediatric cases. Any child referred will have a dedicated named palliative care nurse as their primary contact and a physician with a special interest in PPC. The most common age of children referred to for community pediatric care and their diagnoses are in Tables 8.6 and 8.7 below. Initially the number of children referred for palliative care was small, but numbers are slowly increasing. This is due to increasing awareness of the possible beneﬁt of palliative care intervention, improved collaboration between pediatricians and palliative care services as well as positive feedback from patients and caregivers. Most children referred to date are diagnosed with cancer. From 2007–2009, the most common physical symptoms on presentation were:

• Pain • Weakness and lethargy • Dysphagia • Dyspnoea • Diarrhea/Constipation

Therefore it is important for the community PPC teams to have the skills to manage these and other symptoms as well as the necessary drugs and equipment. The conﬁdence of parents to care for their child will be inﬂuenced by the support and availability of resources the palliative care service accords to them. The presence of a 24 h on call provision has certainly been a reassurance. The period when a child is under community PPC is shown in Table 8.8.

Table 8.6 Age of children referred to Hospis Malaysia, Age Number % 1999–2009 Less than 1 year old 3 1.8 Between 1 and 5 years old 27 16.2 Between 6 and 10 years old 53 31.7 Between 11–15 years old 48 28.7 Between 16–18 years old 36 21.6 Total 167 100

Table 8.7 Main groups of diagnosis of children referred, Diagnosis Number % 1999–2009 Hematological cancers 35 20.9 CNS cancers 48 28.7 Bone cancers 20 12.0 Other cancers 32 19.2 Non cancers 32 19.2 8 Pediatric Palliative Care in Malaysia 121

Table 8.8 Period under community pediatric palliative care, 2005–2009

Year Number of cases <3 days <2 weeks <1 month <3 month <6 month >6 month

2005 13 3 4 1 2 3 2006 17 3 3 2 5 2 2 2007 18 4 1 7 5 1 2008 18 4 1 2 7 3 1 2009 16 1 6 3 2 3 2 Total 82 15 15 15 21 9 8

These data suggests that the majority of children referred (2005–2009 )have been late, 55% having less than 1 month survival, 20% surviving for less than 3 days under the care of the community. Nevertheless, it is hoped that as pediatricians become more conﬁdent and trusting in community pediatric palliative care services, children with LLI will be referred at an earlier point in their illness. In all cases, families will be offered bereavement support after the passing of their child. This is usually done by the palliative care nurse or physician involved in the care of the child (Figs. 8.6 and 8.7).

Fig. 8.6 Dr. Felicia, a palliative care physician with special interest in pediatric palliative care visiting a child at home 122 E. Hamzah and G.L. Kuan

Fig. 8.7 Using writing/art to facilitate communication between the children of a lady with breast cancer

8.8 Community Case Study

In 1995, a 1 year old girl (AA) kept falling and her mother sought the help of traditional healers to cure her. At the age of three, AA was diagnosed with Spinal Muscular Atrophy Type 2. With marked weakness of her lower limbs and trunk, coupled with a severe scoliosis she had spinal surgery and required a wheelchair to ambulate. Her breathing was compromised by the age of 12, she already had been ventilated twice for bronchopneumonia and respiratory failure. AA’s parents were not well off and she had a sister, 4 years older and a brother 5 years younger, diagnosed with the same condition. In Dec 2006 AA aged 12, was referred for community PPC. The aim for a palliative care intervention was to assist the family coping with AA’s physical symptoms. 8 Pediatric Palliative Care in Malaysia 123

Gradually this included, providing daycare, respite for her caregivers as well as providing psychosocial support. The palliative care team included the school in the framework and talking to AA’s teachers and schoolmates helped normalize AA’s childhood experience even with her illness. With a named palliative care doctor and nurse assigned to her, the ability of the pediatric palliative care team to understand and empathize with AA and her family was significantly improved and gradually much of the discussions and interventions focused on emotional, psychological and spiritual needs. Questions on disease progression, onset of menses and the possibility of death began to be expressed. There is also awareness and effect of AA’s younger brothers own journey following in her footpath for all involved to be aware of. AA started taking greater interest in both expressing her views as well as wanting to be allowed her own choices in aspects of treatment and care. In Dec 2009, AA developed constipation and severe abdominal pain. Following further investigations, this was confirmed to be an ovarian teratoma. It was most unfortunate that a series of events construed to delay an effective management plan. A multidisciplinary case conference took place between the hospital pediatric team that cared for AA, the community service, gynecologist, intensive care physicians (both adult and pediatric), anesthesiologist and nursing team. The discussion ranged from those who had direct care of AA advocating her wishes to the others who felt that they knew the best option which is not an issue for negotiation. It was clear that decisions were being discussed from the point of a disease orientated approach to a broader perspective of decisions that impacted on quality of life where death is not an unreasonable outcome. As she faced the prospect of declining physical functioning ability due to her SMA, AA also faced up to the possibility of facing surgery, chemotherapy and radiotherapy with her own views. She expressed her views on not having resuscitation, on the prospect of possibly living with a tracheotomy and ostomy, and the real likelihood of death due to the high risk of death with her reduced breathing capacity. Prior to facing surgery she spoke about her success and regrets in living her adolescent years yet understood that living through adulthood was unlikely. She was aware of the sadness her parents were having caring for her as well as the impact her illness had on the lives of her siblings. She reassured herself that eventually she will be reunited with her family in heaven. Although she made it through surgery, further complications resulted in no further chemotherapy or radiotherapy being pursued. Whilst there were several episodes of pain, breathing difficulties and other physical symptoms that complicated her care at home, care also included supporting family. It was also important for care to conform to the family’s cultural and religious belief systems (Fig. 8.8). Although AA passed away in December, 2009, the community PPC team continues to be engaged in the care of AA’s younger brother and in monitoring the grief and bereavement of the family. 124 E. Hamzah and G.L. Kuan

Fig. 8.8 At home during the latter stages of her illness, needing continuous oxygen and medication for pain

This case illustrates the essential elements identiﬁed in providing the community PPC:

• Understanding the concept of illness from the child’s perspective • A need to be able to develop a therapeutic relationship with the child • An ability to advocate for the child when the need arises • An ability to deal with the symptoms encountered when facing illness and end of life care • To assist in the discussions and decisions involved in end of life care

8.9 Future Research

With only one pediatrician and one palliative care physician with special interest in PPC, it falls on other pediatricians and adult palliative care physicians to help drive care and research in this ﬁeld. While most studies to date concern epidemiological, exploratory and audit studies, it is hoped that as more pediatric departments embrace PPC, clinical intervention and qualitative research will take place. This is important given the multicultural population of Malaysia, and the need for evidence based approaches that are validated in Malaysia versus simply relying on results from other countries with different cultural contexts. 8 Pediatric Palliative Care in Malaysia 125

8.10 The Way Forward for Pediatric Palliative Care

Without a national policy framework for developing PPC, its progress depends on using the initiatives from individual pediatricians or services as well as using other healthcare platforms. Two major conferences have raised interest in PPC, “Pain as a fifth vital sign” in Malaysia (5th June 2009) which demonstrated the need to ensure that all children receive comprehensive pain management. In addition, The “Malaysian Clinical Practice Guidelines on Cancer Pain” was launched in September 2010. Meanwhile PPC seminars and workshops have been conducted and the awareness of the need for PPC has been growing amongst many general pediatricians, subspecialty pediatricians, trainee pediatricians and medical officers as well as medical students. PPC continues to be taught in some medical colleges in Malaysia and a curriculum is currently being developed in PPC for medical officers pursuing the local physician in pediatrics. There are, as of yet, no educational programs for nurses or other allied health care professionals such as social workers, occupational and physiotherapists, who are involved in the care of children with PPC needs especially in hospital environments. Locally the exposure of child health professionals to subjects like pain management and end of life issues in childhood is improving; better advantage should be taken of the many teachable moments provided by caring for a dying patient [13]. A significant number of adult based community palliative care programs are being exposed more often to children. With the assistance of pediatricians, and professionals working in these programs they are generally becoming less fearful about dealing with children diagnosed with a LLI and their families and many of these programs are now are easing their restrictions about admitting children to their services. More work though needs to be done to encourage the hospital based palliative care services to assist in pediatric cases when the need arises.

References

1. National Cancer Registry (2006) Malaysian cancer statistics- data and ﬁgure peninsular Malaysia. Ministry of Health of Malaysia 2. Lan WS, Ismail HIM (2008) A study on the under ﬁve deaths in Malaysia in the year 2006. Ministry of Health of Malaysia, pp 37–38 3. Leong RL (2004) Developments in palliative care in the Ministry of Health Malaysia. Hospital Selayang, Malaysia 4. Leong RL (2004) Palliative care in Malaysia: a decade of progress and going strong. J Pain Palliat Care Pharmacother 17(3–4):77–85 5. Virik HK et al (2009) Paediatrics. In: History of medicine in Malaysia, the development of medical and health services, vol II. University of Malaya Press, Kuala Lumpur, pp 239–240 6. National Specialist Register (2011) Specialties. Academy of Malaysia. www.nsr.org.my. Accessed 2011 7. The Royal College of Paediatrics and Child Health (2003) A guide to the development of children’s palliative care services, 2nd edn. The Royal College of Paediatrics and Child Health, London 126 E. Hamzah and G.L. Kuan

8. American Academy of Pediatrics (2000) Palliative care for children. Pediatrics 106(2): 351–357 9. Lauer ME, Mulhern RK, Hoffman RG, Camitta, BM (1986) Utilization of hospice/home care in pediatric oncology a national survey. Cancer Nurse 9:102–107 10. Sach S (1997) When a child dies. Caring for children with life-threatening conditions. Palliative Care Service Development Series. Human Services, Victoria, Melbourne 11. Finlay I, McQuilan R (1995) The role of an adult palliative care service. Palliat Med 9: 166–167 12. Kuan GL (2009) Setting up a paediatric palliative care service via a 3 year audit on end of life care. Department of Paediatrics, Malacca Hospital. Jalan Haji Mufti Haji Khalil, 75400 Malacca, West Malaysia poster presentation, Palliative care 2009, Combining the 10th APCC and the 8th APHC 24-27/9/2009 Perth, Australia 13. Sahler O, Frager G, Levetown M, Cohn F, Lipson M (2000) Medical education about end of life care in the paediatric setting: principles, challenges and opportunities. Pediatrics 105: 575–584 Chapter 9 Pediatric Palliative Care in the Middle East

Michael Silbermann, Maha Arnaout, Hany Abdel Rahman Sayed, Mohamed Sedky, Mohammad El-Shami, Myriam Ben-Arush, Salma Al-Hadad, Huda Abu-Saad Huijer, Barbara Pitsillides, Nurdan Tacyildiz, Aziza Shad, Reda Rizkallah, and Shamvil Ashraf

Abstract In most Middle Eastern countries pediatric palliative care as a special medical discipline is not as yet in existence. In some countries this specialty is in its infancy, and only in a few countries has it become a recognized specialty and is practiced in the major medical centers. The Middle East, as a region, is seeking support to promote professionals: physicians, nurses, social workers, psychologists, spiritual counselors and art therapists to be well trained and educated in order to initiate such services in pediatric oncology departments in hospitals as well as in the community. It is only recently that Ministries of Health, directors of hospitals and cancer centers, have adopted palliative care, in general, and pediatric palliative care, in particular, as an essential service that deserves the ﬁnancial and moral support of health providers at all administrative levels. The Middle East Cancer Consortium organizes every year training courses at basic and advanced levels for oncologists (medical, surgical and radiotherapists) pediatric oncologists, anesthesiologists, oncology nurses, pediatric psychologists and social workers, with the goal of enhancing the development of palliative care services in primary, secondary and tertiary levels.

Keywords Middle East · Palliative care · Pediatrics

9.1 Introduction

In the United States, Canada, United Kingdom, and Australia, pediatric palliative care is well developed, but in many other countries these kinds of services are still uncommon; however, three quarters of adults and children who need palliative care reside in developing countries [1]. In some countries in the Middle East, children are often not told of their diagnosis of a terminal disease and their prognosis. For the most part, community healthcare–palliative care offerings are designed to treat elderly patients, and only a few such services are offered for dying children and

M. Silbermann (B) Technion-Israel Institute of Technology, Haifa 31074, Israel Middle East Cancer Consortium, Haifa 31074, Israel e-mail: [email protected]

C. Knapp et al. (eds.), Pediatric Palliative Care: Global Perspectives, 127 DOI 10.1007/978-94-007-2570-6_9, C Springer Science+Business Media B.V. 2012 128 M. Silbermann et al. their families [2]. Consequently, family members, especially mothers, carry a high level of the caregiver burden. One of the major issues of concern in most Middle Eastern countries is pain management for dying children; it is, therefore, not surprising that many children are undermedicated [3–5]. In recent years the Middle East Cancer Consortium (MECC) has initiated regional educational activities with the goal of promoting palliative care services for both adults and specifically for children [6–12]. Following the establishment of MECC in 1996, the first issue that came up was the question as to the scope of cancer in its member countries. It was, therefore, decided to start its activities by registering all new cancer patients via a population-based cancer registry regional network. An important issue in such a multinational network is the standardization, coding, and classification of the registries’ data thereby enabling comparative studies among the countries. Despite ongoing regional conflicts, MECC succeeded in coming up with a monograph on cancer incidence in the Middle East [13]. The registries’ work yielded data, related to pediatric cancers, that serves as a good basis to appreciate the scope of pediatric cancers in the Middle East. MECC’s second regional project revolved around a response to the above information that aimed at building capacity for palliative care in the region. To do so effectively, it was necessary to establish a baseline of information on palliative care services in MECC countries and to examine barriers that might exist to the delivery of palliative care. Toward this end, the US National Cancer Institute (NCI), a major sponsor of MECC, commissioned the International Observatory on End of Life Care (Lancaster, UK) to conduct a survey that was published as a monograph in 2008 [14]. The results of this survey clearly indicated the necessity to expand and improve palliative care services for patients suffering from physical as well as psychological and spiritual distress as a result of a cancer diagnosis. Consequently, MECC has begun to address the issue of palliative care by establishing a regional palliative care steering committee with the goal of building a consensus among its members to establish standards for palliative care services. The committee reviewed the situation in each of the participating countries, discussed the needs of patients and families, and adopted the principal of Model of Needs developed by the Canadian Hospice Palliative Care Association. Also, it was agreed to use the World Health Organization (WHO) Public Health Strategy for integrating palliative care into existing health care systems, and the committee envisioned developing “One voice, to guide the implementation of palliative care services to respond to the needs across the Middle East” [15]. As background material, members of the committee shared the existing situation in their respective countries as related to demographic and health issues. The outcomes of these activities are summarized in Tables 9.1 and 9.2.

9.2 Childhood Cancers in Middle East Countries

Unlike in most developed countries, cancer is not a rare disease in all Middle Eastern countries. Whereas the annual incidence of all cancers in children and adolescence younger than 20 year of age ranges between 1–2% in the United States, Israel, and 9 Pediatric Palliative Care in the Middle East 129 15,000,000 2,000,000 1% Kurds – 15,000,000 Muslim – 99% Christians – 97% 97% Palestine West Bank Turkey Christians – 3% Armenian – 1% Sunni Muslim – 28.8% 25.5% ShiitsMuslim – Sunni Muslim – 6% 92% –4.25.54 Cricassion – 1% Christians – 3% Armenian – 60,000 Druze – 1% Druze – 5.4% – Muslim – 98% – Sunni Muslim – 4.9 (Arabs) – Sunni Muslim – Country-specific situation analysis of demographic & health related issues in Middle Eastern Countries 10.2% 76.1% 81% Cyprus Israel Jordan Lebanon Turkish Cypriot – Others – 13.7% Armenian – 1% Alavis – 2.86 3.1 (Jews) Muslim – 11% Greek Orthodox – Greek Orthodox – Others – 8% Shia Muslim – 1% Christians – 40% Greek Orthodox – Table 9.1 age: 0–1415–6465 & overpeople/family 17.50% 70% 12.40% 26.10% 9.70% 64.20% 32.20% 4.20% 63.70% 20% 8% 72% 41.30% 55.30% 3.40% 29.10% 64.00% 6.90% affiliations Ethnic groups Greek Cypriot – PopulationDistribution by 974,600Average no. of 7,373,000 6,198,000 4,050,000 2,350,000 70,586,000 Religions 130 M. Silbermann et al. Palestine West Bank Turkey (continued) Table 9.1 23 320 301 200 100 3500 6.6 3.9 19 12 25.3 17.6 Cyprus Israel Jordan Lebanon 16.30% 21.60%12.5 12.50% 21.1 32.10% 41 58.00% 18.50% – 5.8 – population below poverty line FemaleMalerate/1000 population (2009) 80.9rate/1000 75.9 live births 82.2death: CardiovascularCancer 40.10%Injuries 78.2cases/year: 74.42005 16.90%2004 6.50% 21%2003 71.6cancers/year 2082 25% 71.7 2096 1959 6% 14 21,645 74.7 21,601 21,991 40% 3,678 71.1 3,591 74.5 3,478 13% – 20.10% 8,254 69.51 7,450 7,143 9% 48.30% 1,094 9% 1,261 1,256 12.90% – – 3.50% – Percentage of Life expectancy: Infant birth Infant mortality Major cases of New cancer New pediatric 9 Pediatric Palliative Care in the Middle East 131 Palestine West Bank Turkey –No (continued) training) Table 9.1 3to53–No– 50 Yes (3 weeks of MSc in palliative care cert. Cyprus Israel Jordan Lebanon 2. Lung3. Uterus2. Lung3. Colon19% 2. Colon 3. UterusPhysicians (3) 2. with Colon 3. Lung 2. Colo-rectal 3. Thyroid 15%1MSc,1grand 2. Colo-rectal 2. Colo-rectal 3. Bladder 3. N.H.Lymphoma 3. 2. Colo-rectal Bladder 2. Leukemia – 3. Prostate 3. Stomach 2. Colo-rectal 2. Bone marrow 3. Bladder 2. Stomach – 3. Bladder 70% 52% NoneNo Few 8 None No None Few No No No No FemalesMales 1. Breastdiagnosis Stage 1.III Prostate or IV 1. Breastcertified palliative care specialist- 1. Prostatephysicians 1. Breastpalliative care specialists- 1. Lungnurses 1. Breast 1. Lung 1. Breast 1. Lung 1. Breast 1. Lung palliative care social workers specifically- trained chaplains/ spiritual counselors Types of cancer: Cancer stage at Are there any Are there certified Are there certified Are there 132 M. Silbermann et al. Palestine West Bank Turkey Physicians Physicians Ministry of Health Ministry of Health NGO NCCP Anesthesiologists, Family Physicians, Rheumatologists Office of Pharmaceuticals Ministry of Health Cancer Society Narcotic Dept. By Lebanese (continued) Administration and KHCC Ministry of Health Table 9.1 Cancer Control Program (NCCP) All physicians All physicians Oncologists, NoYesNoNoYes Via the NCCP Via the NCCP No No Yes cancer patients using special prescription development National Cancer Control Plan Cyprus Israel Jordan Lebanon Oncologists for No- in No, but in the Ministry of Health Ministry of Health Food and Drug By NGOs In the National opioids Coordinating Council to develop palliative care care/hospice care included in the National Health Strategy for regulat- ing/overseeing opioid distribution in the country activity to develop palliative care/hospice services Who can prescribe Is there a National Is palliative Who is responsible Has there been any 9 Pediatric Palliative Care in the Middle East 133 Palestine West Bank Turkey (continued) Table 9.1 ] and by the publisher Wolters Kluwer Health, Lippincott Williams & Wilkins, April 9, 2011 15 Cyprus Israel Jordan Lebanon NoNo YesNoVolunteersNoNoNoNo Yes YesNo Yes Yes No Yes No No No Yes Yes No No No formal palliative care/hospice care courses in the country curricula for training health professionals about palliative care curricula for teaching patients, families or caregivers about palliative care existing standards of practice or treatment guidelines Have there been Are there specific Are there specific Are there any Published with permission of Dr. Shannon Moore et al. [ 134 M. Silbermann et al. medicine into the education system - sensitization in order to eventually begin the negotiating process curricular material at the undergraduate level scientific council/ cancer societies- postgraduate level Introducing palliative Develop or adapt Continuing education via reluctance of other professionals of using opioids Resistance and Cultural barriers Legislation barriers Stigma and prejudice International organizations/funding Facilities/ Networks – International meetings – for awareness, education NCI, MECC, other Communication On-going scientific influence final decision makers those involved specialist in pain management Limited abilities to Time constraints of Nobody is a awareness, commitment, advocacy is established and ongoing Knowledge – MECC Teaching experience Discipline-specific situation analysis and developmental steps in Middle Eastern countries Government agencies- country-dependent Higher Education (Medical Schools, Pharmacy Schools, Nursing Schools) Scientific Council Companies Academic Staff Patients and families Media National Council of Medical Association Pharmaceutical Police Legal System Spiritual Leaders Narcotics Office Board Professional Societies NGOs/Advocacy Groups Deans of medical schools Ministry of Health/ Table 9.2 practitioners/ Interns/specialists/ residents/military service physicians Customers Stakeholders Strengths Weaknesses Opportunities Threats Developmental steps General Head of departments Private doctors Academic staff Physicians Medical students 9 Pediatric Palliative Care in the Middle East 135 pain education questionnaire by end of February countries end of March curricular via conferences, journals Situation analysis current Subcommittee to develop Pilot/translate tool all Share results Plan for MECC Publish data, disseminate seen as priority relationship Shortage of nurses Pain education not Resources, budget Nurse/doctor Lack of support experience in MECC countries Diversity skills/ Revise curriculum Lead palliative care curriculum outcomes unclear (continued) Workload Lack of unified pain Educational Table 9.2 experience Knowledge, skills, Networking Capacity Enthusiasm organizations nurses work Organizations where Educational Institutions Professional nursing nurses work professionals Customers Stakeholders Strengths Weaknesses Opportunities Threats Developmental steps Organizations where Patients and families Other health care Nurses Nurses 136 M. Silbermann et al. months): develop training plans within institutions (materials, videos, poster one on one) disciplines (nursing, pharmacy) to coordinate training education program years): pediatric palliative care association program SHORT TERM (3–6 Patient/family education Collaboration with other Continuing medical LONG TERM (3–5 Pediatric fellowship adult services institution education pediatric pain and palliative care Assimilation into Health Care referrals Lack of support from Continuing Lack of research on satisfaction Institutions other educational institutions support for continuing medical education Patient/family Health Care referrals Academic Collaborative with Pharmaceutical other pain services and training workload (continued) Competition from Need more education Time constraints, Institutional support Table 9.2 ] and by the publisher Wolters Kluwer Health, Lippincott Williams & Wilkins, April 9, 2011 care skills, teaching and mentorship 15 Knowledge improves Small community Institutional support Lobbying power System companies Academic Institutions Health Care providers Pharmaceutical National Health Care Institutions Customers Stakeholders Strengths Weaknesses Opportunities Threats Developmental steps Other pediatricians Academic Pediatrics Patient/family Published with permission of Dr. Shannon Moore et. al. [ 9 Pediatric Palliative Care in the Middle East 137 100,000 100,000 18.6/ –– – – 16.26/ 100,000 100,000 13/ 14.3/ 100,000 100,000 III+IV III+IV 63.6%-stage 13.9%–stage Situation analysis of pediatric cancers in Middle Eastern countries – – – – – 15.2/ – – – – – 16.9/ Table 9.3 100,000 100,000 18.1/ 19.6/ (Izmir) (Hacettepe) (TPOG) (Gharbiah) (Aswan) (Jews) (Arabs) (SEER) 100,000 100,000 19.5/ 21.2/ 100,000 100,000 18.20% 11% 19% 15.00% 13.00% 11.00% 8.50% 21.50% 21.00% 15.00% – 0.70% 15.70% 4.80% 1.07% 1.20% 1.80% – 6.30% 5.60% 10% 1.80% 1.80% – – 1–1.5% Jordan Cyprus Turkey Turkey Turkey Egypt Egypt Gaza Israel Israel Iraq Pakistan USA 429 76 211 6566 8355 246 59 153 861 272 367 1348 1812 Neuro. System Lymphomas 13.10%childhood 22%cancers of all cancers 16.10% 33.30% 18.60% 43.40% 8.50% 16.90% 17.50% 25.00% 21.80% 19% 12.50% Leukemias 29.50% 32% 19.40% – 31.30% 11.40% 35.60% 32.60% 23.00% 23.00% 46.60% 39% 27.50% Brain & Females 9.2/ new cases MalesFemales 244 186rates 45 31 114 92 4182 2384 4783 3572 143 103 36 23 465 396 146 126 212 155 860 488 1083 729 Males 9.2/ %of Main tumors YearAge groupTotal No. of (0–15) 2007–8 (0–14) 2005–7Incidence 2007 (0–18) (0–18) 1971–2004 2002–8 (0–18) 2006 (0–20) 2008 (0–15) 2010 (0–18) (0–18) 2006–8 (0–18) 2006–8 2010 (0–14) (0–14) 2006–10 2005 (0–19) 138 M. Silbermann et al. – causes 2. Pneumonia 3. Diarrhea 55% – (2000–2) – – 1. Neonatal tions cies diseases malforma- 2. Congenital 3. Injuries 4. Malignan- (continued) Table 9.3 – – – – – 1. Perinatal gical cies diseases diseases 1. Infectious 2. Cardiolo- 3. Injuries 4. Malignan- (Izmir) (Hacettepe) (TPOG) (Gharbiah) (Aswan) (Jews) (Arabs) (SEER) tions cies malforma- diseases 2. Ill-defined 3. Congenital 4. Perinatal 5. Malignan- – 64% 58% 67.30% – – – 83% 72% 41% – 1. Injuries (KHCC) Jordan Cyprus Turkey Turkey Turkey Egypt Egypt Gaza Israel Israel Iraq Pakistan USA Causes of childhood deaths Survival 75% Jordan – Jordan Cancer Registry, Amman Cyprus – Cyprus Cancer Registry, Nicosia Turkey (Izmir) – Izmit CancerTurkey Registry, Izmir (Hacettepe) – Hacettepe University OncologyTurkey (TPOG) Institute, – Ankara Turkish Pediatric OncologyEgypt Group (Gharbiah) & – Turkish Gharbiah Pediatric Population-Based HematologyEgypt Cancer Group (Aswan) Registry, – Tanta Study Egypt NationalGaza Cancer – Registry, Aswan Personal Profile, Communication Aswan (notIsrael statistically (Jews) confirmed) – Israel NationalIsrael Cancer (Arabs) Registry, Jerusalem – Israel NationalIraq Cancer – Registry, Jerusalem Children Welfare Teaching Hospital,Pakistan Baghdad – Children Cancer Hospital,USA Karachi – SEER (19 registries) 9 Pediatric Palliative Care in the Middle East 139

Turkey; in Egypt, Jordan, and Palestine the rates are steadily increasing (Table 9.3). Prenatal factors are believed to affect the incidence of tumors in children under the age of 5 years. It is, therefore, reasonable to assume the many pediatric cancers result from gene abbreviations during early developmental stages and in utero [16]. In several Middle Eastern countries such as Jordan [17], Turkey (TPOG, Turkish Pediatric Oncology Group) [18], Egypt (Aswan Cancer Registry) [19], Gaza (Palestine) [20], Iraq [21], and Pakistan [22] leukemias comprise about one-third or more of all childhood neoplasms (Table 9.3). Lymphomas occur in high incidence in Cyprus [23], Turkey (Hacettepe) [24], and at the Gharbiya Governorate in Egypt [25] (Table 9.3). Infectious agents such as Epstein-Barr virus, hepatitis B virus, human herpes virus 8, and Human Immunodeficiency Virus (HIV) are considered to be associated with these malignancies. In most countries brain and nervous system tumors comprise between 15–20% of all childhood cancers, similar to the finding in the USA [26] (Table 9.3). As children with advanced diseases frequently present late to the health care system, palliative care becomes a significant priority for comprehensive cancer care in the region. Our recent survey on childhood cancers in Middle Eastern countries showed that the 5-year survival in pediatric oncology patients ranged from 41% in Iraq [21], 55% in Pakistan [22], 58–64% in Turkey [27], 75% in Jordan [58], to 72% in Arab Israeli children and 83% in Jewish Israeli children [28]. The above findings correlate with data from Eastern European 62% and Western European 75% survival rates [29, 30], which could be indicative of the influence of socioeconomic conditions at the national level.

9.3 Where We Are Now

This is a time of an increasing interest in palliative care in general and in pediatrics in particular. There are still parents of children, who die on a pediatric oncology service, that feel that despite treatment at the end of life, their children’s suffering was not adequately relieved and that they, rather than the caregivers, recognized their children’s suffering [31]. Further, many clinicians are relying on their own personal experiences as there is still lack of evidence-based practice. Since in pediatric oncology practice, few die but many suffer (in Israel 20:80 respectively), a paradigm shift must occur that does not equate palliative care with end-of-life care [31]. Practically, as pediatric palliative care is new in most countries throughout the Middle East, most clinicians are unfamiliar with what it has to offer. Thus, many children who could benefit from this service do not receive it, or they receive it later than would be ideal. One of the existing problems is the fact that clinicians often mistakenly believe that palliative care is restricted to patients who are overtly terminally ill and who decide on comfort care only [32]. In addition, clinicians and sometimes families may resist palliative care consults because they may come to symbolize evidence of the patient’s deteriorating, often terminal clinical course, which may be difficult to face. One ought to remember that pediatric palliative care is emotionally charged, and therefore, many times this service occurs in an atmosphere of 140 M. Silbermann et al. desperation. Identifying this emotional subtext as it applies to clinicians, patients, and families is usually a key task in carrying out this service [32]. The Middle East is characterized by multiple religions, cultures, and traditions: Islam (Sunni, Shi’ite), Judaism, Christianity (Greek Orthodox, Roman Catholic, Copt, Maronite, Armenian, Syrian Church), and Druze. In the evidence of a cross-cultural situation such as this, in the Middle East it is essential that providing health care services should be respectful of and responsive to the health beliefs, practices, and cultural and linguistic needs of diverse patients [33]. In several Middle Eastern countries such as Egypt, Jordan, Turkey, and Palestine children make up one-third or more of the population. For this reason MECC made pediatric palliative care one of its highest priority. We all have realized that no matter what culture you come from, death is the same for everyone, and what is important is how you accept it and deal with it. Further, “The differences lie in how the family hierarchy works, and who decides how much information on prognosis or end-of-life should or should not be given to the family members or the dying child” [56]. Much of the initial emphasis in the MECC palliative care project has been on end-of-life because that is where the need is greatest; as discussions of death and dying and even the mention of cancer are still taboo in many countries in the Middle East. The ban about telling a child that he or she is dying is even stronger than about talking to an older person who is dying [83]. Such taboos are not always a cultural barrier but simply a barrier of education and understanding. It is, therefore, of paramount importance that education at all levels be undertaken including families, health care professionals, imams, rabbis, and priests along with politicians and regulators. This multi-level education should be an ongoing process involving pediatric oncologists, pediatric nurses, social workers, and psychologists. This process, however, is still facing barriers since it is a new idea for many societies in the Middle East. At times it is easier to talk about the death of a child with a Druze family that believes in reincarnation or an Arab Christian whose child believes in heaven. By contrast, it is much more difficult for Jewish families to accept that there is no more treatment, and they are more likely to ask for experimental therapies for their child and less likely to sign a do-not-resuscitate order [63]. Taking into account the cultural settings in the Middle East, it became clear that spiritual beliefs should be taken into consideration as they may influence decisions as to whether patients would prefer to die at home or in the hospital. The child’s reliance on his family explains the strong association between family functioning and the child’s psychological adjustment during and after the active illness. Family factor are also important in the adherence to treatment. Therefore, while practicing pediatric palliative care, the family environment has to be evaluated and especially so in societies where family bonds are as intense and important, as is the case in Middle Eastern societies. Moreover, it is recommended that the caregiving team, including the pediatric palliative care personnel, set a stage early in the illness for parents to become willing members of the treatment team rather than passive victims receiving care [34]. As the strong family support is part of the culture in Middle Eastern nations, there is not always a need for psychologists, psychiatrists, and social workers; the caregiving team learns not 9 Pediatric Palliative Care in the Middle East 141 to push social work and psychiatry on the children as they get it in a different form. A very elegant proof of the strong reliance of children on family members emerged at a recent children’s art exhibit. During 2008–2010 MECC, NCI, Bethesda, and MD sponsored the Tracy’s Kids International Art Exhibit, “The Art of Healing.” The exhibit was a collection of over 220 drawings by children with cancer in response to the theme “The day I will never forget.” The thought-provoking drawings were made while the children were being treated for cancer in Egypt, Jordan, Israel, Cyprus, Turkey, and the United States [34]. The drawings were collected in a consistent manner and catalogued in a scholarly way. They were then analyzed using the FEAIS rating test for cultural differences and similarities. It became apparent that a common feature existed among children suffering from cancer that brings them together to become one family regardless of all the differences: Cultural, political, and others; that feature was the longing for home and family. The children in Turkey and Egypt most often expressed themes of separation. The fact that homes in Turkey and Egypt (the two biggest countries in MECC) were far away, and it was difficult to travel, meant these hospitalized children had been away from home for longer periods of time; that might be the reason that children from Turkey and Egypt made more pictures about home than any other country. There may be cultural differences at play in feeling free or not free to express anger, sadness, fear etc. – but the dominant feature was by far the fact of separation from home and family regardless of whether the child came from Istanbul, Cairo, Amman, Jerusalem, Nicosia, or Kalkilia in the West Bank, Palestine. As part of the interaction between hospitalized children, their nurses, and the art therapist, children were asked to draw pictures that described their feelings of fear, frustration, disappoint- ment, hope, and happiness. Thereafter the above caregiver, as part of the palliative care team, discussed the drawings with the children and thereby could approach the inner world of children who so often have to deal with isolation, stress, and regression. As already indicated, palliative care in pediatric oncology is a discipline that is still underdeveloped in most medical centers in the Middle East. One relevant question refers to the site of death and the Quality of Death (QoD) in children; an issue that is very difficult to measure [35]. In a recent study in an Israeli medical center, it became evident that with the building of an integrative model of a pediatric palliative and terminal care unit, which is part of the pediatric hematology oncology department in the Children’s Hospital, the number of patients dying there increased and the number of children dying on the ward decreased [36]. In the western medical cultures, the majority feels that death at home, in the own personal environment is to be preferred over death in the hospital. But sending the child home to die is frequently considered “giving up on us” by the families. Furthermore, the highly personal bonds grown to the caregivers during the time of fighting the cancer can be such a large part of the patient’s and the family’s lives, that the hospital can be more “home” for them than their own home; therefore sending the child away is not always right. Since the issue of determining the QoD in the dying child is still unanswered, we will be able to speed up the 142 M. Silbermann et al. answers to this difficult question as we learn how to use already existing mea- surements of QoD [37, 38], including learning where the best place is for the pediatric patient to die [39]. It is, therefore, important that at the diagnosis of a life-threatening or terminal condition, the pediatric patient and his family should be offered an integrated model of palliative care that continues throughout the course of illness, regardless of the outcome. In order to ease this process, the care giving staff needs to become familiar and comfortable with the provision of palliative care to children [40].

9.4 Where We Want to Go

We now have the means to make a real difference to the lives of children in the throes of their ﬁnal illness and to the lives of their loved ones. It is thus a wonder, that children in the Middle East and elsewhere are dying in conditions that their caregivers – whether family, social, or professional – are increasingly frustrated by, the obstacles to accessing appropriate care. It is time for clinicians to “change gears” from routine chronic disease management to a more personalized palliative care approach. Of importance is to adopt essential clinical skills such as active listening, respecting autonomy, and empathic care – none of which depends on modern infrastructures. These can be implemented anywhere in the world as long as health services respect the importance of clinicians and patients having time together. Moreover, facilitating a good death should be recognized as a core clinical proﬁciency, as basic as diagnosis and treatment. Death should be managed properly, integrating technical expertise with a humanistic and ethical orientation. This is undoubtedly an enormous challenge in politicized, market-driven healthcare models, but one that will make an important difference to those in need [41].

9.4.1 Culture and Care

Every culture has customs and beliefs that may shape the way parents wish their child to be treated or inﬂuence how parents manage the care of their children. Sharing the customs, beliefs, language, and traditions with the care team will help provide more sensitive care. Being able to use a professional interpreter service has beneﬁts such as translation of complex medical information and protection of one’s own privacy [42]. Areas that populations might have certain attitudes or beliefs about:

1. How one thinks about illness, pain and disease 2. Attitudes to medications and nutrition 3. One’s understanding of dying and death 4. Customs surrounding death, burial and bereavement 5. Spiritual matters as well as religion issues 9 Pediatric Palliative Care in the Middle East 143

9.4.2 Pain

The management of pain in children with life-limiting illnesses is complex and unfortunately often done ineffectively. Pain has been approached as a multidimensional symptom that can overshadow all other experiences of both the child and family. Effective palliative care should always include pain assessments along with management of the emotional and spiritual components of pain [43]. New experimental data suggest that pain is not merely a symptom but a disease in itself, one that physicians have only recently come to recognize [44]. “There has been a shift away from thinking of pain as only a sensory experience,” says Dr. Clifford Woolf, a neurologist at Children’s Hospital in Boston. “Rather than targeting the suppression of pain as a symptom, the best treatment now has to be targeted at preventing pain as a disease. That insight really changes the way we understand pain. Also, the pain puzzle involves the psychological, social, and behavioral factors at play. Children with anxiety, often report a high increase of chronic pain.” [44]In dealing with a pediatric dying patient, one faces powerful barriers in establishing appropriate goals of care. These refer to basic ethical guidelines for pediatric end- of-life decision-making among the clinicians and suggest the need for more ethics education and also more clinical education regarding pain management, medically supplied nutrition and hydration, and the use of paralytic agents [45]. In planning pediatric palliative care services in developing countries, it is imperative to understand the differences in the subpopulations (ethnic and religious groups) in order to promote equal opportunities for all those in need of pediatric palliative and end-of-life (PEOL) care. People reported barriers to high-quality palliative care stemming from language barriers and different culturally specific expectations about how a physician should express affection toward pediatric patients. A recent study involving all 50 states in the United States from 1989–2003 revealed that non-Hispanic black and Hispanic white children with complex chronic conditions are 40–55% less likely to die at home than white non-Hispanic children [46]. It is, therefore, imperative that we try to enhance our understanding of the potential social and cultural mechanisms that may be involved in generating populations’ differences and disparities regarding pediatric palliative care [47]. Population-based studies in England have found that ethnic minority status, social deprivation, and lower social class are associated with decreased likelihood of dying at home [48]. Religion and spirituality are cited as primary resources that are being used to cope with symptoms and to make decisions at the end of life [49]. Just as human societies and cultures are composed of many components arrayed in multiple levels of organization interacting over time, so too are the factors and mechanisms that influence how our children are cared for when they are dying. Hence, the multilevel model of reciprocal interaction could be valuable in increasing our understanding of multiple interrelated mechanisms and thereby ameliorate existing disparities in pediatric PEOL care and avert the perpetuation of disparities as new PEOL programs are developed. With attention to the existing disparities and the mechanisms with life-limiting conditions of underlying them, we hope that children in the Middle East will benefit palliative care services of the highest quality. 144 M. Silbermann et al.

Palliative care meets the needs of all patients requiring relief from symptoms and the needs of patients and their families for psychological and supportive care. This is particularly true when patients are in an advanced stage and have a very low chance of being cured or when they are facing the terminal phase of the disease. Because of the emotional, spiritual, social, and economic consequences of cancer and its management, palliative care services addressing the needs of patients and their families, from the time of diagnosis, can improve quality of life and the ability to cope effectively with a deteriorating situation [50, 51]. Despite cancer being an expanding global public health problem, many governments have not yet included cancer control in general and palliative care in particular in their health agendas. Developing countries generally have less access to palliative care services. Palliative care is particularly needed in countries where a high proportion of patients present in advanced stage and there is little chance of cure. Effective palliative care services should be integrated into existing health systems at all levels of care, but especially in the community via home-based care. Such services ought to be adapted to the specific cultural, social, and economic settings. These services should be strategically linked to treatment services for both adults and children. Caring for infants, children, and adolescents during critical illness and up to the end of their lives is one of the most difficult aspects of pediatric practice. One fundamental aspect of this care is working with young patients, their families, and the healthcare team to make difficult decisions [51]. A confounding aspect includes the overarching social orientation to cure, especially when the patient is a child and the fact that the responsibility for decision-making during pediatric illness generally resides with someone other than the patient. Clinicians with solid pediatric backgrounds will often lack exposure to palliative and end-of-life issues as compared to their colleagues in adult healthcare.

9.5 Current Status of Pediatric Palliative Care in Middle Eastern Countries

In the majority of countries in the Middle East, pediatric palliative care services are non-existent or are scarce and in their very initial stages of development. In Cyprus [52], Palestine (West Bank) [53], Iraq [21], Egypt [54], Turkey [55], and Pakistan [22, 56] only few children receive palliative care either in the hospital or at home. In Cyprus there are no health professionals trained in pediatric palliative care, as this discipline has not as yet moved out of the role of supportive care, and there are two main reasons to this:

1. The Ministry of Health has not become involved in covering palliative care expenses. 2. There are a relatively small number of patients on this island, and there is a low mortality rate.

In 2011, the Ministry of Health came up with a new National Strategic Plan, which includes palliative care for the first time, where pediatric palliative care has been 9 Pediatric Palliative Care in the Middle East 145 incorporated as home care. Cyprus, like other Middle Eastern countries, is known for the close, extended, supportive families, and pediatric palliative care would then insure that all the family is cared for and involved in the final stage of a child’s life [57]. In Jordan, the first and only pediatric palliative service was established in 2005 at the King Hussein Cancer Center (KHCC) in Amman, which was merged with the ongoing pain management program in that center. The multidisciplinary palliative care team is comprised of a full-time pediatric oncologist, a full-time pediatrician, a pediatric hematology/oncology fellow, and two full-time clinical nurse specialists. In addition, parents are considered integral members of the team and play a major role in care planning. Part-time staff includes a psychologist and a social worker. Initially the efforts were to develop a hospital-based service due to the limitations in providing home care. Currently the palliative care service is based on outpatient care, yet the team is on call 24/7 and covers all pain and palliative care patients. Although home care services would be the preferred option, presently such services do not operate, only via phone; thus patients are more comfortable receiving treatment in the hospital or the clinic rather than at home.

9.6 Barriers

The barriers that the pediatric palliative care team faces relate to family, health care providers, and environment:

• Family – Families that are referred to palliative care service may develop a sense of alienation, isolation, and fear of being neglected by their treating oncologist. Moreover, families often have unrealistic expectations. For the most part, families’ understanding of the nature of palliative care relies on their social background and education, and these might affect their willingness to receive home care. The feature of child neglect is another barrier especially among the low socio-economic classes or in large families. • Health care providers – Professional colleagues may cause difﬁculties in the daily work of the pediatric palliative care team due to a lack of awareness, a fact that leads to staff burnout. This includes denial of oncologists of the need to refer patients for palliative care, along with poor understanding by physicians and nurses of the nature of the potential beneﬁts of such a service. Further, physicians, and nurses quite often are uneasy caring for a terminal patient. • Environment – The fact that only small number of professionals are interested in the discipline of palliative care is as an additional barrier. In cases, the pediatric palliative care service lacks the appropriate physical environment, which hinders the homely-supportive millieu that is so essential for the sick child.

Since the establishment of the pain management and palliative care service, the consumption of opioids in children has steadily increased. In conclusion, in Jordan, 146 M. Silbermann et al. pediatric palliative care services are feasible and necessary for children with cancer. Access to training and opportunities for further development is essential. Of importance is the empowering of families and patients in decision-making, thereby establishing meaningful, trusting relationships [58]. One of the main needs of children in palliative care is pain management. Unfortunately, in most Middle Eastern societies, there are still myths and misconceptions surrounding childhood pain that form a genuine obstacle in pain management in children with cancer. These include: children are able to tolerate pain more readily than adults, children cannot tell the truth about pain, children who play cannot be in pain, and those who are given opiate-based medication will become addicted to it. Very recently the first pediatric palliative care unit was opened at the Cancer Institute, Dokuz Eylul University Hospital in Izmir, Turkey. The new palliative working group faced barriers associated with pain management that were related to a lack of communication between the treating physicians and nurses. The establishment of this new unit promoted to use of morphine in pediatric patients along with the incorporation of a child psychiatrist in the team’s missions [59]. Additionally, the new palliative care group still lacks a social worker, which prevents extending the social needs of the child and his family; the child’s educational needs, the child’s sense of isolation from home, friends, school, and the child’s fear of the disease and the treatment; such a new service badly needs standardized clinical guidelines. In a recent survey, pediatric oncology centers throughout Turkey responded to a questionnaire that referred to the current situation with regard to palliative care services within their centers [60]. The results are shown in Table 9.4. Only one out of 16 centers responded that there is a palliative care service. Overall, the majority of children with cancer throughout the Middle East die at home where they are cared for by their family. In Egypt, the National Cancer Institute (NCI) affiliated with Cairo University, is the largest comprehensive cancer center; where in 2008, there were 20,000 new adult patients and 2,000 new pediatric patients treated. Pediatric palliative care services (PCS) started in late 2007 as an outpatient facility in the 100-bed inpatient department. The PCS is comprised of experts in pain management, nursing, and social worker. Advanced degrees (MSC & PhD) are offered in pediatric palliative care. Due to the strong cultural tradition of family support, Egypt offers also training programs aimed at patients’ families, which are the principle caregiver at home. Such programs include basic knowledge on diseases and practicalities related to home care. In a recent study it was documented that 75% of Egyptian patients with advanced cancer died at home [61]. Starting in late 2010, a new palliative care program was initiated in the Children’s Cancer Hospital Egypt (CCHE) in Cairo. The multidisciplinary team includes full-time palliative care consultants, assisted by two pediatric oncology consultants; a pain management service, a psycho-oncologist, two dedicated nurses, and a social worker. This service provides outpatient consultations as well as home care by a physician and a nurse. The prevailing cultural approach to death in general, and to the dying child in particular, presents considerable ethical challenges and controversies concerning open briefing and discussion on the prognosis of the terminally ill child. To date, many 9 Pediatric Palliative Care in the Middle East 147 Limited Social , physiotherapy and bereavement services for patients and families training ] Yes + practical PC continuing education for MDs and RNs 60 training PC education in medical curriculum PC home care service % of Patients receiving EoLC in hospital Palliative care in Turkish pediatric oncology centers Beds for PC Table 9.4 ––95––YesYes – – 50 – Yes + practical Yes + practical Yes PC team in hospital (Ankara) Institute Akdeniz University (Antalya)AY,Ankara Oncology HospitalDiyarbakir Child Hospital –Dr For Sami adults Ulus only Child Hospital 18 – 5 – 60–70 – – 10–20 – – – – – Yes – Limited – – – Dokuz Eylul University (Izmir)Ege University (Izmir)GATA – (Ankara) YesHacettepe University (Ankara)Istanbul Bilim UniversityIstanbul Goztepe – HospitalIstanbul – Kartal HospitalIstanbul University Oncology – – – –Izmir Tepecik Child HospitalUludag University (Bursa) <50 –Yuzuncu Yil University (Van) – – – – – – 10–20 – – 50 – – 100 100 80 – – 50 – – Limited Less – than 10 70 – 50 – – – – Yes – – Yes – – – – – – Yes – Yes Yes – – – – – – – Yes – Yes Limited Limited Yes – Yes Yes – Center Ankara Universty – – 95Based on a survey conducted by Prof. Nurdan Tacyildiz – involving 16 Turkish Pediatric Oncology Centers 2011– Ref. [ Yes + practical 148 M. Silbermann et al. cultural and religious traditions in the Middle East resist open discussions with the patient with respect to their imminent death. For the most part, families tend to protect the child and prefer to discuss such matters directly with the caregivers, not taking into account the child’s wish and desire to be part of such a discussion. Hence, the major obstacles in further developing pediatric palliative care services dwell in the following:

1. The child as the patient often lacks verbal skills to describe and express his/her feelings and needs. 2. The family is often controlled by unrealistic expectations and/or denial. It also faces difﬁculties with the siblings and with stigmatization. 3. The medical profession still suffers from opioidphobia and from being a “death -denying culture”. 4. Governing bodies don’t recognize the importance of pediatric palliative care, and don’t count it as an integral service in cancer management.

To overcome the obstacle above, the following targets must be met:

1. Enhance education, especially of the families with emphasis on home care services. 2. Develop and integrate palliative care services in the community. 3. Encourage voluntarism. 4. Modify and update the current Egyptian Narcotics Control Law in order to facilitate the use of morphine and other opioids for cancer patients [62].

The current situation of pediatric palliative care in Israel is very close to that in other developed countries. Seventy to eighty percent of all pediatric oncology patients that are treated in one of the six pediatric hematology oncology centers are dying in the hospital. All are followed by the palliative care multidisciplinary team that is comprised of: a pediatrician, pediatric oncologist, pediatric oncology nurse, social worker, clinical psychologist, art therapist, physiotherapist, and a medical clown. Special care is being offered to adolescents during their hospitalization, including do not resuscitate (DNR) orders, help from school, friends, and volunteers. The Israeli Ministry of Health considers decreasing the age of informed consent from 18 to 14–16 years, including the children’s consent on DNR, and experimental modes of therapy. The focus of treatment is on the sick child rather than the interests of his/her parents [63]. More recently, the Israel Society of Pediatric Hematology Oncology initiated an educational program aimed at pediatric oncology fellows. This program includes lessons in the pharmacology of opioids, symptoms management, and psychosocial approaches for the handling of the dying child. Overall, the palliative care team follows the guidelines for pain management issued by the European Association for Palliative Care (IMPaCCT) [64]. In a recent study it was documented that the overall use of opioids in the Israeli population increased [65], which is also true for pediatric patients; as clinical evidence revealed that major opioids can be used safely and effectively in children suffering from moderate to severe cancer related pains. 9 Pediatric Palliative Care in the Middle East 149

In Lebanon, the number of pediatric cancer patients has increasing, and in 2003, the National Cancer Registry in Lebanon reported 237 new cases. In 2009, 136 new cases were reported by the American University of Beirut Medical Center [66]. Yet, in spite of the fact that the number of children suffering from cancer is increasing, Lebanon still lags behind with respect to formal education and training in palliative care [67]. The palliative care program at the Children’s Cancer Center of Lebanon (CCCL) is limited to hospital-based care or home-based care [67]. A signiﬁcant contribution to the success of treating children with cancer is the multidisciplinary approach of patient care, in which the nurse serves a key role. By and large, palliative care is currently undergoing important developments concerning national strategies involving education, service, research, and policies [68]. The palliative care service at the Children’s Cancer Hospital (CCH) in Karachi, Pakistan started in 2007 by offering good pain management and supportive care to hospitalized children. The service has a regular supply of oral and parenteral morphine, tramadol, and other analgesics. The service still lacks a dedicated pediatric palliative care nurse. Several barriers have been indentiﬁed and these relate to:

• Patients – Parents face difﬁculties accepting the fact that no curative treatment is available for their child and, therefore, often turn to spiritual (ruhani) treatment. Forty percent of all hospitalized children come from remote areas, and once the parents are informed about the diagnosis and grim prognosis the child is brought back home, never to receive an end-of-life care. • Facilities – In the CCH there is a severe shortage of palliative care staff: physicians, nurses, social workers, psychologists, and other support services. Nurses are not involved right from the beginning of the treatment, which is a fact that hinders the building of the essential report with the patient and his family.

The treatment team lacks communication skills concerning dying, death, and bereavement. For the most part the treatment team is not allowed to address these issues in the presence of the sick child. The lack of home-based palliative care services is a critical impediment in the overall care. As a consequence the following items have been adopted as a high priority in the provision of pediatric palliative care in the Karachi CCH:

1. Early detection 2. Recruitment of a nurse, social worker, and a psychologist to the treatment team 3. Establishing an outpatient palliative care clinic 4. Initiating a home-care pediatric palliative care service 5. Professional education and training to physicians and nurses [22]

Taking into consideration the culture and social structures in the Middle East countries, and based on our experiences in the region, the following would be our recommendations for all those countries lacking established pediatric palliative care services and desiring to develop services in the coming years. Begin by giving priority to the development of home care palliative care programs, so children can be 150 M. Silbermann et al. surrounded by their family members, who play an important role in children’s care. Family solidarity and family-centered care are still very strong in this part of the world. Home and community health care services have the advantage of avoiding the discomfort associated with attending the outpatient clinic and especially so for those who reside far away from the hospital. An additional advantage to home care services is their lower cost [21]. For such programs to succeed they should meet the following pre-requites:

1. The service has to be comprehensive, whereby pain and symptom management should be complemented by psychological, social, and spiritual support and guidance. 2. Dedicated and experienced nurses for the most part carry the task of providing good palliation at home. It is imperative that the visiting nurse should be able to gain the conﬁdence of the child and his/her family in a relatively short period of time. 3. The home care service should ensure 24-h telephone availability otherwise the families involved feel insecure and frustrated. 4. Since caregivers providing home services quite often feel “isolated”, continuing social and professional gathering are of high importance. 5. The family care-givers should be trained and advised as to how to operate simple medical devices along with changing dressing, the preparation of medications, etc. 6. It is very important to give ongoing psychological support to the caregivers themselves. Working in remote places and caring for terminally sick children is often emotionally burdening and leads to stress and burnout.

That does not mean that the hospital ward does not have an important place and role, as it is the only place for the provision of more complicated treatment where the family lacks the ability to take care of their child.

9.7 The Role of the Nurse in Pediatric Palliative Care

In all Middle Eastern countries oncology nurses are carrying the major load of cancer palliation both for adults and children. Nurses are still facing critical barriers and obstacles in trying to carry out this mission. In a recent survey among Turkish oncology nurses, 114 nurses (working in medical oncology and surgical oncology services) indicated that the most commonly perceived barriers in the management of pain were system- related including:

1. Lack of psychological support services 2. Patient-to-nurse ratio 3. Lack of social workers 4. Lack of guidelines for pain management 9 Pediatric Palliative Care in the Middle East 151

5. Lack of access to professionals with expertise in protocols for pain management 6. Difﬁculties in communicating with physicians to discuss pain management 7. Lack of a properly designed patient’s individual charts for the treatment of pain 8. Lack of non-pharmacological modalities for pain management

Most nurses lack the professional background needed for palliative care implementation and especially so with regard to the use of opioids in pain management. Palliative care in general has not as yet been incorporate into the curriculum of nursing at both the undergraduate and postgraduate level [69]. Another recent study examined the oncology healthcare professional’s views on palliative care and involved 235 nurses, 84 physicians, 18 physiotherapists, 16 clinicians, 5 social workers, and 4 psychologists in Turkey. The study found that 53.7% never received any education or training on palliative care, neither at school nor thereafter. The barriers to providing palliative care services were ignorance (44.4%) and lack of education (42.9%) [70]. In Cyprus the main challenge for palliative care nurses resides in the lack of public education. Myths, stigmas, and misinformation about opioids still exist in Cyprus. Oncology nurses are the patients’ advocate, and patients can achieve control of the pain by using pain diaries ensuring that they feel safe, listened to, and pain free [71]. In the Palestinian Authority (West Bank) nurses are facing ongoing barriers that can be listed in ﬁve main categories:

1. Pain treatment and palliative care are not a discipline in high priority at the ministerial level. 2. The direct involvement of an oncology nurse is limited to administrating medications to the patient; however, due to high a workload no time is left for the nurse to assess pain, and there is a lack of training and education in palliative care in general. 3. The myths and misbeliefs of nurses regarding side effects of opioids. 4. The negative public attitude toward pain perception and pain management. 5. Mistrust between staff, patient, and family. The combination of ignorance among healthcare workers with the myths about opioids, results in failure to extend patients their needed treatment [72].

In Jordan, from interviews with oncology nurses the following major themes arose:

1. Inadequate training and education as related to the management of cancer pain, poor knowledge, and fear of opioid use. 2. Patient/family related barriers. Families fear that complaining of pain could dis- tract the course of the treatment. Also, patients often ﬁnd it difﬁcult to report to the nurse the magnitude of the pain. 3. Poor coordination and communication among the oncology team members. For the most part the oncologist focuses on curing the cancer whereas the nurse is left to care for the patient [73]. 152 M. Silbermann et al.

In Israel, the palliative care nurse plays a pivotal role in the team’s ongoing activities. The palliative care nurses do pain assessment on a daily basis. Nurses are aware and active in titration and opioid rotation, and often activate the residents on call to change patient’s pain medication. The nurses’ involvement is not confined to hospitalized patients but extends to those undergoing chemotherapy and/or radiotherapy on an outpatient basis. The nurse is also involved in cases of uncontrolled pain and other complex conditions, and she serves as the source for pain understanding and skills to other nursing staff in the hospital. However, in spite of the fact that the palliative care nurse is well informed about new strategies for the management of pain, there is definitely the need for ongoing continuing education and thereby to create a nursing partnership at all levels in the hospital and the community [74]. Pain educational programs for oncology nurses in Israel are based on the axiom that pain is considered the fifth vital sign, and nurses have to evaluate and monitor the patient’s level of pain every shift or visit. The pain-training program for nurses is divided into:

1. A generic curriculum in nursing schools. 2. An advanced module of post-basic oncology nursing as part of the palliative care module. The programs deal with physical, medical, pharmalogical, and cultural aspects of pain management. Within the frame of this program, students are required to interview patients and health professionals and prepare a written essay on a chosen aspect of pain based on their personal observations and the professional literature.

To face the ever-changing health environment, the palliative care nurse should have a seat and voice at the decision-making forum that in turn will enable her to advocate and impact the child’s care including pain-management. Further, the palliative care nurse can play a crucial role in shaping policy, clinical practice, and the child’s experience of pain [75].

9.8 Spiritual Perspectives and Practices at the End-of-Life Application to Palliative Care

In the Middle East, Islam is the largest religion and is the fastest growing religion in the region. Over 90% of all people in the Middle East observe Islam as their religion and faith. However, Islamic religious practices can reflect cultural and geographic differences as other religions do. Thus, culture may dictate some practices, yet religions and social structures are difficult to separate. Health issues are very important to Muslims, and parents are required to seek treatment for their sick child and to follow the medical and nursing suggestions relevant to the child’s care. In Islam, the family is the foundation of the society, and when a child is dying Muslims usually say, “All of us belong to Allah and unto him shall we return,” and death is considered as the beginning of eternal life and life in paradise with Allah [76]. In Islam 9 Pediatric Palliative Care in the Middle East 153 end-of-life is a time of re-examining or re-affirming personal faith with the goal of achieving a peaceful death. Participation in religious rituals can be an important priority for terminally ill adults and children and their families. A palliative care team is obliged to promote a sense of well-being and to ease suffering in the patients; the former need to be sensitive to and have an appreciation of various religious traditions in order to meet the unique spiritual needs of patients and families. Understanding the different faiths and rituals will help the palliative care provider to be sensitive and proactive in addressing such needs and to ensure a “good death” and healthy bereavement to follow. In basic Islam teaching, pain and symptom management may have to be balanced against the patient’s (adolescents, adults, and to a lesser extent young children) ability to participate in prayers and other religious rituals in the final moments of life. Such activities are believed an important means to ensure the soul’s passage to a better afterlife until the time of the resurrection. When the young patient is conscious, imminent dying provides final moments for reflection and forgiveness. Family and friends may also assist the mature child and adolescent patient in religious observances or pray when he/she is unconscious. For all these reasons, the proximity of loved ones is very important for the dying process, and that is one of the major reasons for Muslims to have their children die at home [77]. Important to all the major religions in the Middle East: Islam, Judaism, and Christianity are the beliefs and customs related to human suffering, the death experience, and an afterlife. Further, all of the above religions strive for a peaceful experience at the end-of-life. Along these lines, praying for and being with the dying child at the time of death is highly valued across these cultures. For this reason, the palliative care professionals should plan for the care of the family and community along with that of the child to assure “good death” and dignity with minimal suffering [77].

9.9 In Summary

For too long, pain and its management have been prisoners of myth, irrationality, ignorance, and cultural bias. That is why insufficient pain management is a significant public health concern in Middle Eastern countries and adequate relief relies on access to a variety of treatment options. Making real improvements in pain management will require the proactive efforts of many organizations, and we believe that education as well as discipline should be the cornerstone of efforts to improve pain management in general and pediatric pain specifically. In Middle Eastern countries, most of the programs in palliative care have largely been driven by the non-governmental sector. This has resulted from an extraordinary collaboration between the state, Non-Governmental Organizations (NGOs), healthcare professionals, and volunteers. Until we can reliably and easily cure cancer, it is imperative that the principles of palliative care be incorporated into comprehensive cancer control programs [78]. In most Middle Eastern societies, the family keeps close ties with all its members, and consequently, at time of trouble, the entire 154 M. Silbermann et al. family gets together to help and assist the family member involved. Hence, in practice the family can function as palliative care unit at home. The Turkish Ministry of Health has recently launched a new national project entitled Pallia-Turk whereby palliative care will be strongly endorsed. This project will lend special importance to the development of new community-based family physicians including pediatricians and nurses and creating a new palliative care model – thus strengthening the provision of palliative care in the community [79]. It is recommended that the pediatric palliative care team follow the patient across the trajectory of the disease. The initial palliative care assessment is aimed at getting a sense of the child’s baseline physical and emotional status, so the team can help more effectively when the diseased child starts to go through the treatment procedures. When appropriate, the team comes with balloons to have a party and sing and dance. If end-of-life care is needed, the team knows the family members and their psychological and spiritual issues, which can make end-of-life care a lot easier for everyone concerned, including the staff. Let us not forget that the biggest institutional obstacle to palliative care is the struggle between cure and palliation. On the oncology side, many still see palliative care as end-of-life and do not see it in broader terms. Even in the palliative care community, many still convey themselves as end-of-life caregivers. So, it is a problem that is being perpetrated on both sides. It should be noted that if a new pediatric palliative team wants to start a palliative care service at a hospital or clinic, they need to begin at the bedside helping one patient at a time. They need to show everyone what they can do because many people still do not know what palliative care is. They need to treat the service that they want to establish as if it were a private practice; they need to be there, be available, and also be palliative for other staff members [80]. Taking into consideration the current status of pediatric palliative care in the various countries in the Middle East, it seems that the most urgent task would be to focus on the education of professional staff members, physicians and nurses, in order to come up with a reliable, updated nucleus of experts who would be responsible for the development of modern pediatric palliative care teams. This objective can be accomplished via national and regional training courses along with well- formulated didactic courses and bedside training in each country organised by either the respective national organisation, Ministries of Health or universities and medical centers. A third party such as the American Oncology Nursing Society, the Middle East Cancer Consortium, or others can facilitate the organisation of such educational activities in the region. Also, we strongly feel that spending a year in a leading pediatric palliative care center in North America would be advantageous in cultivating the local champions that would then initiate local training and educational activities in their own institutes. MECC partners are now working to introduce basic guidelines for palliative care, including pediatric patients. After 5 years of efforts, the project is starting to bear fruit. It will be, however, slow because palliative care has a very profound cultural and religious element that has to be taken into consideration [81]. Approaching people in developing countries with a sense of humility and 9 Pediatric Palliative Care in the Middle East 155 willingness to learn from them as well as teach them is critical for success. The palliative initiative that MECC has undertaken is going to be a rewarding one because, while we start with the Middle East, one can take the information and experience on how we did it to other developing regions as well. Moreover, lessons learned from other cultures can be applied in the Middle East. As already indicated above, there are some very simple things that could be done to improve the life of the pediatric patient. Things like spending time with him/her and making sure that there is company around, rather than relying exclusively on medication. Yes, in developed countries, palliation relies to great extent on medication, yet there are many things in addition to medication that one can do to improve a child’s quality of life throughout his illness. Of note, the Middle East has been experiencing political conflicts throughout the last century, and it feels as if social structures of countries in the region are changing. Cancer palliation generally and pediatric palliative care specifically are strong candidates to serve as tools to overcome cross-border political and social conflicts [82–84]. MECC’s commitment to the universal allegiance of medical professionals to the relief of suffering is reinforced by the dialogue of different cultures and beliefs, and this may provide a seed of peace and understanding for the entire region [85]. MECC is committed to pediatric palliative care, despite disagreements between the local governments and their policies. In MECC – with people from many countries, and many cultural and religions heritage – common goodness and caring are the dominant spirit. With this kind of approach MECC activities center on taking care of patients and their families not just the disease [86].

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Saleh Al-Alaiyan and Mohammad Zaﬁr Al-Shahri

Abstract The oldest palliative care program in Saudi Arabia is now two decades old. The program was designed in a general format to accommodate adults and children with life-limiting conditions. To date, the great majority of clients receiving services in palliative care programs in Saudi Arabia continue to be adults with advanced cancer. No speciﬁc pediatric palliative care programs or advocacy groups exist in Saudi Arabia. The efforts of some health institutions in pursuing staff specialization in pediatric palliative care are still in their infancy. In view of the paramount need for pediatric palliative care services and the relatively slow development of palliative care programs in general, development of palliative care needs to be raised on the health policy-makers’ agenda with due consideration to pediatric palliative care programs in particular. Although, the adoption of palliative care-friendly policies and the improvement of access to essential medications are important steps in Saudi Arabia, the pivotal step towards better development of palliative care is probably the training of health professionals.

Keywords Saudi Arabia · Pediatric palliative care · End of life care · Life threatening illness · Childhood cancer

10.1 Introduction

10.1.1 Demography

Saudi Arabia is a vast country located in the southwest corner of Asia, sharing borders with Yemen, Oman, United Arab Emirates, Qatar, Kuwait, Iraq and Jordan. It occupies approximately four- ﬁfths of the Arabian Peninsula with an area of about 2.25 million squared kilometers and total population of more than 27 million, of which 69% are Saudi nationals [1]. More than 1.5 billion Muslims across the world consider the two cities in the West of Saudi Arabia, namely Makkah and Medina,

S. Al-Alaiyan (B) Department of Pediatrics, King Faisal Specialist Hospital & Research Centre, Riyadh 11211, Saudi Arabia e-mail: [email protected]

C. Knapp et al. (eds.), Pediatric Palliative Care: Global Perspectives, 161 DOI 10.1007/978-94-007-2570-6_10, C Springer Science+Business Media B.V. 2012 162 S. Al-Alaiyan and M.Z. Al-Shahri the ultimate Holy Land. In the global economy, Saudi Arabia is known to have the richest reservoirs of oil in the world and is currently the largest producer and exporter of oil worldwide. Hence, the largely oil-based Saudi economy with a Gross Domestic Product (GDP) approaching 370 billion US dollars for the year 2009 [2].

10.1.2 Health System

The Ministry of Health (MOH) is the main provider of health care and is the ultimate supervising body for health services in the country. The other two health sectors are the non-MOH governmental sector (including military and non-military health services) and the private health sector. At the base of the hierarchy of the health system are about 2,000 primary healthcare centers distributed throughout cities and villages. The MOH adopts a referral system for patient transfer, when needed, from one level of care to another reaching to the tertiary healthcare facilities located in heavily populated cities [3]. Patients treated outside the private sector are generally treated free of charge. However, a health insurance system is evolving and will eventually provide care for all individuals residing in the country.

10.1.3 Culture

Tribal, economic and educational factors are certainly important in forming the Saudi culture. However, Islam is certainly the main factor responsible for shaping the Saudi culture. This is consistently expressed in Saudis’ day-to-day life as well as in the legal system of the country. As a fundamental doctrine in the Islamic faith, people believe in predestination and attribute the occurrence of disease and death to the will of Allah (the creator of the universe). The belief in predestination does not seem to prevent Saudis from seeking medical treatment or preventive health services, such as immunization or periodic screening. Despite the developmental boom in medical services, traditional medical practices are still available in some rural and urban areas of Saudi Arabia. The main modalities of traditional medicine include cauterizing, herbal medicine, dietary treatments, chiropractic, fracture reduction, and cupping [4]. Traditional healers are often illiterate people who inherit the trade from their predecessors. From our experience, many of those who fail to follow up with their treating physicians and only present at clinics when their diseases become far advanced, have been using traditional medicine modalities. Saudi children are often over-protected by their families [5]. This may even be more evident when the child is diagnosed with a life-limiting illness. Parents and other adult relatives would very often request healthcare providers to hide information on diagnosis and prognosis from the sick child and other children in the family. 10 Pediatric Palliative Care in Saudi Arabia 163

10.2 Children with Life-Limiting Illnesses

About one- third of the Saudi population is children below 15 years of age. For every 1,000 live births, the infant mortality and under ﬁve mortality rates are 18.6 and 21.7, respectively. The total number of deaths reported to MOH hospitals amounted to 40,073 in the year 2006, of these, only 4.6% were attributable to cancer. However, signiﬁcant underreporting of deaths is likely, given the reported crude death rate of 4 per 1,000 [3]. In the year 2006, 706 cancer cases were reported among children less than 14 years of age, representing 6.4% of the cancer cases reported for all age groups. The most common cancers among children included leukemia, lymphomas and central nervous system malignancies [6]. Other life-limiting conditions are not uncommon among Saudi children. A recent report on the incidence of inborn errors of metabolism suggested that 150 cases per 100,000 live births is an underestimate [7]. Cerebral palsy was diagnosed in about 413 children per 100,000 live births in one of the major health institutions in Riyadh, the capital [8]. Due to the cultural preponderance of consanguineous marriages among Saudis, hereditary blood diseases such as sickle cell disease, hemophilia and thalassemia are not uncommon, especially in certain regions of the country [9–11]. Neonatal deaths are mainly due to prematurity and its complications, low birth weight, congenital malformations and infection [12–13].

10.3 Palliative Care in Saudi Arabia

10.3.1 History of Development

A home based palliative care program was started in King Faisal Specialist Hospital and Research Center, Riyadh (KFSHRC-R) in 1991. The program soon developed into a comprehensive palliative care program with in-patient, out-patient and home care components [14]. A structured postgraduate palliative medicine fellowship program was established in the year 2000 and continues to actively train physicians from the Kingdom of Saudi Arabia. The program is also open for applications from the neighboring states of the Gulf Cooperation Council, namely, Bahrain, Kuwait, Oman, Qatar and United Arab Emirates [15]. One of the authors of this chapter (M.Z.A.) has been privileged to be the first Saudi graduate of the fellowship program and is currently the program director. This program is, so far, the only palliative medicine subspecialty training fellowship in Saudi Arabia and the whole Arab World. Currently, several palliative care services have been established. All of these services are affiliated with oncology departments in tertiary health institutions in the three largest cities, namely Riyadh, Jeddah and Dammam. To date there are about 20 palliative care physicians in the whole country, of these only about 50% have received structured training in palliative care locally and (or) overseas. Very few nurses have been trained and qualified in palliative care. However, nurses 164 S. Al-Alaiyan and M.Z. Al-Shahri with good palliative care experience are practicing in the available palliative care programs. Other health professionals such as spiritual care providers, social workers, occupational therapists, clinical pharmacists, dietitians, psychotherapists and others usually collaborate with the palliative care teams rather than being full time palliative care personnel. These multidisciplinary professionals have variable degrees of palliative care experience, usually with no formal qualifications or training in palliative care. One of the palliative care programs is seriously working on establishing a 1-year structured educational program for spiritual care providers (Fig. 10.1).

10.3.2 Pediatric Palliative Care

Specialized pediatric palliative care programs do not exist in Saudi Arabia so far. One of the palliative care physicians in the KFSHRC-R program is a pediatrician with extensive experience in pediatric hemato-oncology. Another program in a major tertiary institution in Jeddah sponsored a young qualiﬁed pediatrician who is currently pursuing sub-specialization in pediatric palliative care in North America. Considering the genuine need for palliative care programs for children and the age of palliative care in Saudi Arabia that is approaching two decades, pediatric palliative care development is certainly overdue. Neonatologists have expressed serious concerns about the absolute lack of neonatal palliative care services in the country despite the undoubtedly paramount need [16].

Fig. 10.1 Sky view of King Faisal Specialist Hospital & Research Centre-Riyadh 10 Pediatric Palliative Care in Saudi Arabia 165

10.3.3 Models of Palliative Care Services

All the currently available palliative care programs provide care that covers the inpatient and the outpatient aspects of service in addition to providing around the clock coverage for emergencies. Despite the availability of palliative home care services in the three largest cities, no hospices or sub-acute palliative care units are available to date. This is probably the main reason behind the relatively long duration of stay in palliative care inpatient units on average (24 days) and the fact that the majority of palliative care patients die in tertiary palliative care units [17]. However, it is a subject for debate whether or not a stand-alone palliative care model would be culturally appropriate to the Saudi community, for the fear that such stand-alone models might be stigmatized of being “death homes” and admission to which might be viewed by some as a sign of abandonment of the patient by his (or her) relatives [18]. A well-developed home healthcare model, instead, might be much more appropriate to the Saudi community, given the deeply rooted respect for family in Saudi culture [4]. Normally, the extended family and local community play an important role in supporting the immediate family of a dying patient to deal with funeral rites. These rites are similar for children and adults and include ritual washing, shrouding, funeral prayer and burial [19].

10.3.4 Patient Population

With the exception of the program in the KFSHRC-R, palliative care programs are almost exclusively looking after adult cancer patients. Although the great majority of patients cared for by the palliative care program in KFSHRC-R are adults with advanced cancer, adults with non-cancer diagnoses as well as children with cancer and non-cancer diagnoses are occasionally admitted to the program. Indeed, the palliative care professionals continue to encourage other healthcare professionals to refer patients to the program on consultation basis. However, when the aim of referral is complete transfer-of-care, there are speciﬁc eligibility criteria that need to be met before the referral is accepted. Table 10.1 summarizes the criteria for transfer-of-care to the palliative care program in KFSHRC-R [20].

Table 10.1 Eligibility criteria for transfer-of-care to palliative care program in the KFSHRC-R

• Completion of the “Not for Cardio-Pulmonary Resuscitation” form • Availability of a detailed and updated medical report • No disease-modifying therapy is possible • Life expectancy is estimated at less than 6 months • The disease is far advanced, highly symptomatic, rapidly progressive and life-threatening • Patient (if adult) and family understand the diagnosis, prognosis, and treatment options and accept transfer of care to the palliative care team 166 S. Al-Alaiyan and M.Z. Al-Shahri

10.3.5 Administrative Aspects

The fact that palliative care programs in Saudi Arabia are administratively part of adult oncology services may be a major factor preventing more optimal utilization of such programs by other services including child health services. Other possible reasons for the suboptimal utilization of palliative care programs for children may include the signiﬁcantly limited palliative care resources in general and the tendency of some referring physicians to refer patients for the sake of transfer-of-care of terminally ill patients only when they become too sick, hoping to ﬁnd them beds in a palliative care unit already known of its consistently high occupancy rate [20]. The medical use of opioids in Saudi Arabia is far below the global average [21]. This may be more attributable to the scarcity of palliative care services and lack of awareness among healthcare professionals than to legislative constraints or cultural concerns on the medical use of opioids [22].

10.3.6 Advocacy

Unfortunately, no speciﬁc palliative care advocacy groups exist in Saudi Arabia. However, palliative care professionals continue their diligent multifaceted efforts aimed at improving awareness among healthcare professionals and the public through scientiﬁc conferences, grand rounds, lectures, awareness days, television and radio programs as well as publications targeting the community in the Arabic language [23].

10.4 The Way Forward

The development of palliative care in Saudi Arabia is certainly skewed towards adult palliative care. The need to swiftly act on developing pediatric palliative care programs to meet the huge demand cannot be overemphasized. Indeed, the development of both adult and pediatric palliative care services need to be boosted, though in a more balanced fashion that gives pediatric palliative care services due consideration. We believe that the opportunities for improvement are not very much different from those identiﬁed in other countries [24–25]. These opportunities include improving awareness among health policy-makers so that palliative care gains better recognition as a highly needed specialty; investing in palliative care educational programs; improving access to palliative care services throughout the country; and collaboration between stakeholders on the national, regional and international levels. Indeed, one of the main keys to success is probably investing in the training of champions who will pioneer and be able to train others and initiate advocacy programs. National programs for palliative care have been proposed and are likely to promote education, improve public awareness and, more importantly, ensure provision of palliative care to patients and families in their localities [26]. 10 Pediatric Palliative Care in Saudi Arabia 167

References

1. Central Department of Statistics & Information (2010) Key indicators. Kingdom of Saudi Arabia. http://www.cdsi.gov.sa/english/index.php. Accessed 23 Nov 2010 2. The World Bank (2011) Saudi Arabia. The World Bank. http://data.worldbank.org/country/ saudi-arabia. Accessed 9 Mar 2011 3. Ministry of Health (2006) Health statistical year book, 2006. Dar Al-Hilal Press, Riyadh 4. Al-Shahri MZ (2002) Culturally sensitive caring for Saudi patients. J Transcult Nurs 13(2):134–139 5. Owusu GB, Al Amri M, Dufresne K, Moore P, Stewart BL, Sabbah W (2005) Attitudes of a sample of Saudi parents towards behavior management in a pediatric dental clinic. Saudi Dent J 17(1):3–9 6. Saudi Cancer Registry (2006) Saudi Cancer incidence report 2006. Ministry of Health. http:// www.scr.org.sa/reports/SCR2006.pdf. Accessed 23 Nov 2010 7. Moammar H, Cheriyan G, Mathew R, Al-Sannaa N (2010) Incidence and patterns of inborn errors of metabolism in the Eastern province of Saudi Arabia, 1983–2008. Ann Saudi Med 30(4):271–277 8. Al-Asmari A, Al Moutaery K, Akhdar F, Al Jadid M (2006) Cerebral palsy: incidence and clinical features in Saudi Arabia. Disabil Rehabil 28(22):1373–1377 9. Perrine RP, John P, Pembrey M, Perrine S (1981) Sickle cell disease in Saudi Arabs in early childhood. Arch Dis Child 56(3):187–92 10. Al-Awamy BH (2000) Thalassemia syndromes in Saudi Arabia: Meta-analysis of local studies. Saudi Med J 21(1):8–17 11. Al Fawaz IM, Gader AMA, Bahakim HM, Al Mohareb F, AlMomen AK, Harakati MS (1996) Hereditary bleeding disorders in Riyadh, Saudi Arabia. Ann Saudi Med 16:2 57–61 12. Bassuni W, Abbag F, Asindi A, Al Barki A, Al Binali AM (1997) Neonatal deaths in the Asir region of Saudi Arabia: experience in a referral neonatal intensive care unit. Ann Saudi Med 17(5):522–526 13. Majeed-Saidan MA, Kashlan FT, Al-Zahrani AA, Ezzedeen FY, Ammari AN (2008) Pattern of neonatal and postneonatal deaths over a decade (1995–2004) at a military hospital in Saudi Arabia. Saudi Med J 29(6):879–883 14. Gray AJ, Ezzat A, Volker S (1995) Developing palliative care services for terminally ill patients in Saudi Arabia. Ann Saudi Med 15(4):370–377 15. Nixon A (2003) Palliative care in Saudi Arabia: a brief history. J Pain Palliat Care Pharmacother 17(3–4):45–49 16. Al-Alaiyan S, Al-Hazzani F (2009) The need for hospital-based neonatal palliative care programs in Saudi Arabia. Ann Saudi Med 29(5):337–341 17. Alsirafy SA, Hassan AA, Al-Shhari MZ (2009) Hospitalization pattern in a hospital-based palliative care program: an example from Saudi Arabia. Am J Hosp Palliat Med 26(1):52–56 18. Al-Shahri MZ (2009) Stand-alone palliative care facilities: a cultural viewpoint. IAHPC Newsletter 10(5). http://www.hospicecare.com/news/09/05/regional_report.html. Accessed 2011 19. Al-Shahri MZ, Fadul N, Elsayem A (2007) Death, dying and burial rites in Islam. Eur J Palliat Care 14(4):164–167 20. Al-Shahri MZ, Sroor MY, Alsirafy SA (2010) The impact of implementing referral criteria on the pattern of referrals and admissions to a palliative care program in Saudi Arabia. J Support Oncol 8(2):78–81 21. Pain and Policy Studies Group (2007) Opioid consumption statistics focus on WHO regions – SEARO and WPRO. http://www.painpolicy.wisc.edu/publicat/monograp/aphconf07.pdf. Accessed 23 Nov 2010 22. Al-Shahri MZ (2009) Cancer pain: progress and ongoing issues in Saudi Arabia. Pain Resp Manage 14(5):359–360 23. Al-Shahri MZ (2006) Palliative care. [In Arabic]. Al-Humaidhi Press, Riyadh 168 S. Al-Alaiyan and M.Z. Al-Shahri

24. Lynch T, Clark D, Centeno C, Rocafort J, Flores LA, Greenwood A, Praill D, Brasch S, Giordano A, De Lima L, Wright M (2009) Barriers to the development of palliative care in the countries of Central and Eastern Europe and the Commonwealth of Independent States. J Pain Symptom Manage 37(3):305–315 25. Lynch T, Clark D, Centeno C, Rocafort J, De Lima L, Filbet M, Hegedos K, Belle O, Giordano A, Guillén F, Wright M (2010) Barriers to the development of palliative care in Western Europe. Palliat Med. doi:10.1177/0269216310368578 26. Al-Shahri MZ, Brown SM, Bruera ED (2004) Palliative care: proposal for a national program in Saudi Arabia. Saudi Med J 25(12):1791–1795 Chapter 11 Paediatric Palliative Care in Singapore

Mei-Yoke Chan and Noor Aishah Abdul Rashid

Abstract Paediatric palliative care is the “Cinderella” of the palliative movement in the world. It is lagging behind adult palliative movement for a variety of reasons. In Singapore, the situation is no different: the adult palliative services are more developed and more accepted by the medical community as well as the public. When it comes to paediatric palliative services, there is a denial of its necessity and a lack of resources and support. However, the winds of change are here and there is currently a formal Paediatric Palliative Care Programme in the only children’s hospital in Singapore, the KK Women’s and Children’s Hospital. More funding is in the pipeline and the programme is set to expand. Paediatric palliative care has its own unique challenges and barriers which may make it difﬁcult for adult services to serve paediatric palliative needs. There are many misconceptions about what palliative care is about and what role it should play in paediatric care, even amongst doctors. Hopefully with increasing awareness and better availability of services, and best of all, when the end-users (physicians as well as patient and family) experience the added value of palliative care, there would be better acceptance and utilisation of paediatric palliative services so that it becomes a necessary part of basic holistic health care for children with life-threatening or life-limiting illnesses.

Keywords Singapore · Paediatric palliative care · Integrated care · Holistic care · KKH Paediatric Palliative Care Programme · Transition · Hospice care

11.1 Introduction

Singapore is an island city-state located at the southern tip of the Malay Peninsula, 137 km north of the equator. It is the largest of only three sovereign city-states in the world but the smallest nation in Southeast Asia at 712 km3. However it is the third most densely populated nation in the world, with just over 5 million people and it continues to grow [1].

M.-Y. Chan (B) Paediatric Palliative Service, Department of Paediatric Subspecialties, KK Women’s and Children’s Hospital, Singapore, Singapore 229899 e-mail: [email protected]

C. Knapp et al. (eds.), Pediatric Palliative Care: Global Perspectives, 169 DOI 10.1007/978-94-007-2570-6_11, C Springer Science+Business Media B.V. 2012 170 M.-Y. Chan and N.A. Abdul Rashid

Singapore is a relatively young nation, having acquired full independence only in 1965, and the median age of its population is 37.4 years [2]. Being resource- scarce, the top three contributors to the Gross Domestic Product (GDP) are found in the manufacturing sector, wholesale and retail trade and ﬁnancial services. The per-capital GDP in 2010 is US$47,405 and the nation enjoys a low unemployment rate of 2.2% [1]. Unfortunately, Singapore is also the tenth most expensive city in the world to live in. Singapore is a multiracial and multicultural secular country, with the main racial groups being Chinese, Malay and Indian. The country recognises four ofﬁcial languages: English, Mandarin Chinese, Malay and Tamil. In general, there is racial and religious tolerance. Singapore is a parliamentary republic with representative democracy as its political system.

11.2 The Singapore Healthcare System

Singapore has a universal healthcare system with enforced savings, called the Medisave scheme, with government subsidies and price controls coexisting with supplemental private health insurance. Only 3% of its annual GDP is spent on healthcare. A system of means testing was introduced in 2009 to better distribute government subsidies to the appropriate income category and to control healthcare costs. However, government subsidies apply mainly to inpatient hospitalisation costs and largely exclude outpatient or homecare/community care costs. This signiﬁcantly impacts the provision of palliative care services in the community. Most of the palliative care services in the community are provided and funded by volunteer and non-government charitable organisations. In response to the rising demand for home healthcare services, including palliative care and hospice care, the government has started to liberalise the use of Medisave and government subsidies. However there are still limits to what can be subsidised. For example, although the government is starting to partially fund home palliative care according to a sliding scale based on means testing, it has not agreed to fund bereavement care for survivors or psychosocial care for patients and their families. In general, healthcare in Singapore is geared more towards preventive medicine and conventional curative medicine. But there are promising signs of change in the horizon!

11.3 Paediatric Palliative Care Services

Palliative care services in Singapore started in 1985 in a freestanding facility (St Joseph’s Home) for adult destitute patients, mainly with terminal cancer. A group of volunteer doctors, nurses and lay people then extended this free service to the patients’ homes, thus starting an ad-hoc palliative home care service. The dedication and perseverance of this pioneering group gave rise to the Singapore 11 Paediatric Palliative Care in Singapore 171

Hospice Council in 1995. The Council represents eight voluntary organisations that receive funding from the government and serve the needs of patients in Singapore requiring palliative and hospice care. Historically, terminally ill children usually died in hospitals under the care of their primary care team as there was no formal paediatric palliative care programme and the adult palliative programme often could not cope with the different problems and demands of paediatric patients. In September 2004, Paediatric Palliative Care Programme was formed at the KK Women’s and Children’s Hospital in response to this gap in service. This also became the ﬁrst formal paediatric home palliative care service in Singapore. The programme was initiated by the hospital’s Paediatric Haematology-Oncology Service to provide transitional care from the curative phase to palliation for children with terminal cancer and to enable the patients to spend quality time at home with their families. The programme was funded in April 2005 for 5 years by a charitable organisation. With access to funds, the service was extended to children with non-oncological illnesses in August 2005.

11.3.1 Target Population of Children Requiring Palliative Care Services – Oncology

Annually, there are about 150 new cases of childhood cancer diagnosed in Singapore, of which 70% are treated at KK Women’s and Children’s Hospital (KKH) [3]. The general cure rate is currently between 70 and 75%. Therefore, it is estimated that there would be at least 40–50 new cases of childhood cancer that would require palliative care services each year. If children with relapsed cancers or poor prognostic cancers such as Stage 4 neuroblastoma are included, then the number of children who would beneﬁt from palliative care would be higher. The number of referrals to the KKH paediatric palliative service from 2004 to 2010 is shown in Fig. 11.1. Note that children with non-oncological life limiting illnesses were accepted to the service beginning in August 2005. Although there has been an increasing number of referrals to the service, there are still many children with cancer who are not appropriately referred. This became the focus of a Clinical Practice Improvement Project (CPIP) that was undertaken

25 21 19 20 18 17 14 14 Number of patients 15 Onco 9 9 10 10 7 8 Non-onco 6 5 5 0 0 2004 2005 2006 2007 2008 2009 2010

Fig. 11.1 Number of palliative patients referred from 2004–2010 172 M.-Y. Chan and N.A. Abdul Rashid in 2009 in an attempt to increase the referrals of appropriate oncology cases (this project is further described in the research section of this chapter). One of the main barriers to referral is the lack of buy-in from senior staff. Instead of emphasising the “negative” aspects of palliative care, such as, helping patients and families accept futility, deciding on do no resuscitate, place of death, etc., we ﬁnd it often helps to position our service as a “value-added” service that either makes the job of the primary physician easier (“You are too busy to spend a lot of time talking to your patients; we can help you by talking to the patients and families for you so that you can free up your time for your other work.”) or improves the life of the patient (“Your oncologist is going to help you live as long as possible with your cancer; and we (the palliative care specialists) are going to focus on helping you live as well as possible with your cancer.”) [4]. The majority of KKH’s referrals are from the Haematology-Oncology Service (largely due to the fact that the palliative team is led by a paediatric oncologist) as illustrated by Fig. 11.2. Figure 11.3 shows that children with leukaemia or brain tumours constitute the largest oncology group in the palliative referrals.

Non onco 34% Onco, 66% Onco Non onco

Fig. 11.2 Types of referrals from 2004–2010

Fig. 11.3 Types of diagnoses for oncology cases from 2004–2010 11 Paediatric Palliative Care in Singapore 173

11.3.2 Target Population of Children Requiring Palliative Care Services – Non-oncology

As mentioned previously, when it was realised that children with non-cancer life- limiting illness did not have access to any homecare programme and indeed are often a forgotten group, the KKH paediatric palliative programme was extended to them starting in August 2005. Since that time, the most common type of illness that the referred children have is neurological which includes severe cerebral palsy, neurodegenerative diseases, neurometabolic diseases, neuromuscular diseases and congenital structural abnormalities. Other conditions that have been referred to the KKH service are genetic or chromosomal anomalies, congenital cardiac abnormalities and rare haematological illnesses. Figure 11.4 shows the type and number of non-oncology cases referred to the KKH program. Unfortunately, there are no figures on the incidence of such life limiting illnesses in Singapore making it is difficult to estimate the number of non-oncological patients requiring palliative care. However, it is clear that there are obvious gaps in the referral pattern. For example, we know that the group of children with severe congenital heart disease, especially those that are not correctable, such as hypoplas- tic left heart syndrome, children with Eisenmenger’s syndrome etc., are seldom referred. It is helpful to identify or to “cultivate” a particular specialist in the field such as a neurologist or cardiologist who is sympathetic to the palliative movement and who will identify and refer appropriate patients from his/her specialty. Once the advantages of having the palliative team on board are evident, such as reduction

Fig. 11.4 Types of diagnoses for non-oncology cases from 2005–2010 174 M.-Y. Chan and N.A. Abdul Rashid in hospital visits and better symptom control, subsequent and greater numbers of referrals will hopefully be made earlier. Another group we have not seen many referrals is the perinatal/neonatal cases. These are pre-viable babies born with severe developmental or structural abnormalities such as anencephaly, extremely premature babies with severe co-morbidities, or expected stillbirths (e.g., babies diagnosed with Bart’s hydrops fetalis). The Neonatology department in KKH has a Bereavement Support Group run by volunteer neonatal nurses who support parents during the imminent death of their baby. There is a quiet room set apart from the neonatal unit for parents to have privacy to grieve (Fig. 11.5). However, if the child were to survive longer than expected and the family returns home, the service, which is run by volunteers, is unable to provide support at home, either in the form of symptom control or emotional and psychosocial support. This is a service gap that the paediatric palliative team can help to ﬁll. In an attempt to integrate the existing three complementary homecare types of programmes in KKH (the Paediatric Palliative Care Programme, the Neonatal Bereavement Support Group and the KKH Homecare Programme – which helps to support the discharge of children requiring technological aids to survive), a common referral form (Fig. 11.6) is drawn up and the nurses of the three teams meet whenever necessary to cross-refer or transfer care of patients from one programme to another when it is deemed appropriate. Communication between teams and between patient/family and team is paramount to ensure the patient’s goals of care are respected and to ensure smooth, seamless transfer or shared care.

Fig. 11.5 KKH Neonatal quiet room 11 Paediatric Palliative Care in Singapore 175

Patient’s Sticky Label

INTEGRATED PAEDIATRIC HOMECARE REFERRAL FORM Please select service type and call respective provider once the form is completed Paediatric Palliative Care Service (PPCS) Paediatric HomeCare Urgent HP: 92997729 HP: 812156712 Reason for Referral to PPCS Pain and symptom control Neonatal Psychosocial support HP: 81217996 Non-Urgent Terminal care Father’s name: Contact no.: Language:

Mother’s name: Contact no.: Language: Home: Present location Hospital: Ward / Bed

Date of Referral: Family informed of referral: Yes/No

Primary Physician: MSW in-charge: Referral to Rehabilitation Services: Occupational Therapist Physiotherapist Speech Therapist

(Please Circle) Prognosis : 0–6 days / 1–7 weeks / 2–3 months / 4–6 months / 7–12 months / >12 months

Medical History in detail Current Problems: Diagnosis: e.g. pain, vomiting, seizures, SOB

Please tick the required service and/or equipments needed: Services Equipments Home oxygen therapy BIPAP Machine Suctioning CPAP Machine

Stoma / Wound care Oxygen Concentrator Tracheostomy Ventilator Enteral feeding: (Specify) Suction machine Non Invasive Ventilatory support: CPAP/BIPAP Enteral Feeding Pump Catheterisation: CIC/Indwelling Wheelchair Pain control: oral/subcut/IV Others (specify) Others (Specify

Referral by: Name of Physician / Signature / Date

67100-Form-0003 (Feb 2011)

Fig. 11.6 KKH common referral form for paediatric palliative care and homecare services 176 M.-Y. Chan and N.A. Abdul Rashid

11.3.3 Settings of Care

In Singapore, paediatric palliative care is provided in the inpatient, community, and home settings. In KKH, the paediatric palliative care service does not have an allocated ward for hospitalised inpatients. Patients are admitted to the relevant paediatric ward in KKH depending on their primary diagnosis if complex symptom care management is required or even for respite if parents are not coping at home. However, for patients at the end of life who need privacy, an isolation single room will be arranged. Most healthcare workers in acute care hospitals in Singapore do not have experience caring for dying patients and there are constant challenges faced by the palliative team in trying to “de-escalate” standard practices of care in an acute hospital setting. Staff is often unfamiliar with the drugs and dosages prescribed and need constant reassurance. The KKH programme has an ongoing educational component that aims to conduct regular palliative care workshops for nurses and doctors in the hospital. KKH also has a day therapy unit (Fig. 11.7). Blood product transfusions are often given to children in palliative care to enhance their quality of life. These groups of children often have cancer or some haematological condition and they have access to the Children’s Day Therapy Unit where they can receive blood products safely in the day and go home upon completion. In Singapore, there are eight community agencies providing palliative homecare and hospice service for adults. Assisi Hospice is the only hospice willing to care

Fig. 11.7 KKH Children’s Day Therapy Unit 11 Paediatric Palliative Care in Singapore 177 for children and tries to reserve at least one bed for children. They provide both homecare and inpatient hospice care. The KKH Paediatric Palliative Care Programme is currently reaching out to other community agencies interested in taking on the care of children with life-limiting illnesses. Staff from KKH is sent to the various agencies to teach and staff from the various agencies is sent to KKH to observe and shadow the paediatric palliative team in their daily work. Although this exchange of information is important and helps staff from both agencies, funding remains an issue. Paediatric palliative care is different from adult palliative care in many ways and that has given rise to tensions between the community agencies more familiar with adult palliative care, and the referring paediatric hospital trying to transfer care of the dying child to the community. In adult palliative care, the patient is usually transferred completely to the community without issue. The patient and family accept the transition and the services provided by the community more easily and usually do not return to the referring hospital, unless the patient has a difficult medical or symptomatic problem requiring tertiary input from the hospital. However for paediatric patients, due to the unique and often prolonged relationship between the family and the primary physician and hospital, it is often very difficult for the community services to gain the trust of the family and take care of the child without the family questioning and checking every decision or treatment. Indeed the family may not allow anything to be done to the child without insisting on getting the approval of the primary physician. Alternatively, they may not take the advice of the community service providers and “run back” to the hospital even for relatively minor problems. This understandably causes the community service providers to feel that they are “not good enough” or that the primary physician did not prepare the family sufficiently to accept futility. It does not help when the primary care team feels “overly-protective” of the patient and feels that the care provided by the community team is not up to par. It may be difficult for the community team to understand the levels of functioning of families dealing with a dying child: while parents may accept on one level that their child is dying, on another level they are still hoping for a miracle cure whether it is rational or not. So they expect the community team to respond instantly to their calls, they want everything to be provided (procedures and care that in adult palliative setting would be considered inappropriate) and they constantly compare (whether verbally or through their body language!) the quality of care in the community to the hospital acute inpatient setting. What can we do to relieve this tension? Unfortunately there is no one easy, quick- fix solution. Communication, patience and forbearance on both sides are keys to the success of any transition programme. Since the child is usually identified in the hospital, we strive to include the community team during the first few meetings with the family while they are still in hospital so that all parties involved (patient and family, hospital primary care team, hospital palliative care team and community team) can agree on goals of care and deliver consistently good care. Ultimately we have to keep the child in the centre of our focus and remember that whatever we do is for the child’s benefit. 178 M.-Y. Chan and N.A. Abdul Rashid

Finally, home based palliative care services are available in Singapore. Home is the preferred place of care for most of the patients. The paediatric palliative nurses make home visits regularly and whenever necessary to minimise hospital visits and hospitalisations. Some patients are sent home with CPAP (Continuous Positive Airway Pressure) and BiPAP (Bilevel Positive Airway Pressure) machines, oxygen concentrators or suction machines. Caregivers are taught by the nurses of the KKH Homecare Programme, which is a sister programme to the KKH Palliative Care Programme, run by the Children’s Intensive Care Unit team to facilitate home discharge of patients who depend on medical technology and aids to survive; to operate the machines and troubleshoot minor problems. If the patient is also a palliative patient, then the KKH palliative team will make home visits to help to adjust settings of the machines if necessary and take care of other symptoms as well. It is logistically difﬁcult to support home blood product transfusions in Singapore, as there are issues regarding accountability and safety. Although the practice is not forbidden by law, it is generally not done. However, KKH’s palliative nurses are able to do simple procedures like blood taking if a central line is in-situ, urine catherisation, changing of nasogastric tube, setting up subcutaneous infusions which are mainly for morphine and other pain medications, and other procedures.

11.3.4 Providers of Care

Palliative care requires a multidisciplinary approach with personnel like the primary care physician, palliative nurse, palliative physician, medical social worker (MSW), and others. The primary care physician and other support staff involved in the long term care of the patient are identified early to ensure a seamless transition from hospital to home. The multidisciplinary team meets weekly to discuss the patients and their care issues. These meetings serve to provide psychosocial and emotional support to staff of the palliative team as well. What follows is a description of the team. There are two trained paediatric palliative care nurses who received training from Royal Children’s Hospital, Melbourne, Australia. They perform a major role in the education of parents/caregivers, coordination of discharge plans, home visits and phone consults. They are also skilled and familiar in managing symptoms and end of life issues. The medical social worker provides psychosocial support for these groups of children with terminal illness and their families. She helps in assessing the financial status of the families, and determines the need and quantum of financial assistance. She also follows up with bereavement care for the family when necessary. The Children’s Cancer Foundation (CCF) is a non-profit organisation that supports the care of oncology patients financially, emotionally and psychosocially as well as tries to fulfill the last wishes of the terminally ill children. The foundation has child life specialists, social workers and counsellors who are assigned to each child and family. The organisation recognises the need for coordinated and seamless support for children with cancer who transition into palliative care. There is a 11 Paediatric Palliative Care in Singapore 179 dedicated palliative care team consisting of a social worker and a counsellor who takes over the care of a palliative patient from the inpatient hospital team. In regard to physician care, terminally ill children in KKH were initially cared for on an ad-hoc basis with the guidance of a part-time adult palliative physician (who cares for adult women oncology palliative patients in KKH) together with a paediatric oncologist and a paediatric anaesthetist trained in pain management. When the first paediatric palliative nurse was trained in September 2004, a paediatric palliative team was formed and funding formally applied for to both governmental and charitable organisations. The programme went through many ups and downs including an initial failed partnership with a community agency due to unre- solved tensions mentioned previously and shortage of staff leading to the formation of a group of volunteer doctors to provide medical cover, especially after office hours. Currently, the team is led by a paediatric oncologist with an interest in paediatric palliative care and also includes a resident full-time palliative physician (who covers both women and children with palliative needs), two full-time trained paediatric palliative nurses, a medical social worker from the hospital, a social worker from CCF, a counsellor from CCF and an oncology pharmacist who has an interest in palliative care. The primary referring physician is always kept in the loop and can be depended on to provide medical advice pertaining to the patient’s specific underlying illness, if necessary.

11.3.5 Provision of Services

Originally the service was started with the intention of providing 24 h, 7 days a week coverage. Unfortunately, with increasing referrals to the service without a concurrent increase in staffing, a decision was made to limit the provision of services to 1 office hours only for 5 /2 days a week. This is possible because Singapore is a small country and access to urgent medical care is easily available. The caregivers are also given an action plan in anticipation of problems and certain drugs are also given to them on standby where necessary. Even so, the team very often will work or leave the phone on after office hours when there is a very sick patient. Services available for the child are diverse. Symptom control is paramount but whatever is given or done is typically in consultation with the child and family so that there is alignment of goals of care. Pain control can therefore be in the form of oral medications which may be given via a nasogastric tube, transdermal patches, subcutaneous infusions, intravenous infusions (in children who have a central line in-situ) or even epidural infusions. The social worker or counsellor from CCF provides play therapy, counselling, outings or fulfillment of wishes for children with cancer. Unfortunately, this service is not extended to non-cancer cases. For non-cancer cases, children will be referred to the Wish Foundation, a charity that aims to fulfill the last wishes of children with life-limiting illness. 180 M.-Y. Chan and N.A. Abdul Rashid

Several services are also available to the caregiver and/or family. Caregiver training and education is provided by the palliative nurses in the care of the child, for example instruction on nasogastric tube feeding, suction of secretions, intravenous or subcutaneous infusions or even care of a child on CPAP or BiPAP machines. Counselling or ﬁnancial aid are also provided when necessary by the medical social worker. Finally, respite care is offered if needed. The child is either admitted to the original hospital or to a hospice or a community hospital. This option however, is not often taken up for a variety of reasons. The main service provided to the community is education and increasing the awareness of palliative care as an option of care. The few interested community agencies are also in the midst of being trained so that they are better equipped to look after these children in the community in the near future. Coordination and integration of services is an important component of the program at KKH. Previously, services between specialties in the hospital and services between the hospital and community were coordinated by the primary referring team from the hospital. There was not much integration of services per se which led to a lot of unhappiness and insecurities on the part of the patients and their families, leading to a high rate of re-admissions. Now there is an Agency for Integrated Care (AIC) operating under the aegis of the Ministry of Health, which aims to be a coordinating and integrating body between the services in the hospital and the community. The Paediatric Palliative Care Programme in KKH is being funded by the Totalisator Board (as described in the next section) and the funds will be disbursed and services coordinated by AIC. The agency will also be collecting data to ensure that the programme is cost-effective, efﬁcient and sustainable.

11.4 Research and Ongoing Programmes

Unfortunately, paediatric palliative care service in Singapore is still very much in its infancy and service issues are more pressing than research. Yet, data is being collected regarding the referral rates, types of patients and care given, as well as costs of running the service. Thus there is not much formal or large-scale research going on for paediatric palliative care. However, there are small projects being done and grant applications are being submitted, some of these efforts are discussed below. The Clinical Practice Improvement Project was undertaken in 2009 to improve the referral rate of appropriate paediatric oncology patients to the paediatric palliative service in KKH. Barriers to referral identiﬁed included primary physicians’ misunderstanding of the role of palliative care, primary team being too busy or “for- got” to refer and the “prognostic paralysis” of both patients and healthcare workers involved. With increased educational workshops/teachings as well as the placing of “palliative champions” in the oncology wards and care areas to remind primary team to refer, the referral rate improved from 50 to 70–100%. There are plans now to include the palliative team in the care of all newly diagnosed cancer cases so that needs can be identiﬁed early. 11 Paediatric Palliative Care in Singapore 181

Another 2–3 year pilot project which recently received funding from the Totalisator Board under the aegis of the Ministry of Health will train community partner agencies to eventually take over the care of children with palliative needs or complex care needs in the community, with the KKH Paediatric Palliative Care team as a resource and collaborator. This project also funds the KKH Homecare Programme run by the Children’s Intensive Care team which aims to discharge patients with complex conditions who require technological aids to survive, safely to their homes. There is obviously some overlap to the two programmes as some patients in the Homecare Programme also have palliative needs, while some patients in the Palliative Programme require technological aids. The combined project will hopefully streamline the two projects. Finally, KKH’s paediatric palliative programme identiﬁed and recruited patients/caregivers to participate in the Singapore Hospice Council survey. This was a nationwide survey on the public awareness of hospice services and willingness to pay for these services. Currently palliative care for both children and adults are free and funded partially by the government and mainly by charitable funds. The results of the survey are currently being analysed and a report will be written in due course. Although paediatric palliative care in Singapore is lagging behind in terms of research, Singapore had a boost in research capability in adult palliative medicine when the Lien Centre for Palliative Care opened in 2008 with a generous endowment fund by a local philanthropist. It is the ﬁrst palliative care research and training centre in Asia that aims to raise awareness of the cultural differences in the attitudes and beliefs towards those who are dying [5]. One of the projects completed was a report on the Global Quality of Death Index commissioned by the Lien Centre in 2010 [6]. It is hoped that the Centre will be interested in doing or facilitating research in paediatric palliative medicine in the near future.

11.5 Local Highlights Concerning Paediatric Palliative Care in Singapore

One of the biggest accomplishments regarding the advancement of the cause of paediatric palliative care was holding the 18th World Congress of the Children’s Hospice International in September 2007 in Singapore. The Minister of Health was the guest of honour and it was from this platform that he mooted the idea of making hospice and home palliative care part of the healthcare delivery system in Singapore [7]. Although at that time, his pressing concern was the “silver tsunami” – increase in aging population, the speech he gave brought the issue of palliative care to the forefront which also started the ball rolling on funding practices and staffing issues from the government. It was also at this platform that the Minister announced that Palliative Medicine will be recognised as a subspecialty in order to attract more healthcare workers into the field [8]. It took another 3 years before Palliative Medicine was finally recognised formally as a medical subspecialty and the first batch of palliative physicians was 182 M.-Y. Chan and N.A. Abdul Rashid

“grandfathered” into the subspecialty in December 2010. A 2–3 year Palliative Medicine subspecialty training programme was organised and the ﬁrst batch of trainees graduated recently. Doctors interested in obtaining subspecialty training in Palliative Medicine can either enter the training programme as a basic trainee (if the doctor does not have a specialist degree) or an advanced trainee (if the doctor has a specialist degree in recognised specialties like Internal Medicine, Paediatrics, Geriatrics etc). Additionally, the Ministry of Health has tasked a workgroup of practising palliative physicians to come up with a National Strategy for Palliative Care. Paediatric palliative medicine is being considered separately as a unique group that may have different practices and goals as compared to adult palliative medicine. This initiative came about in part as a response to the Global Quality of Death Index report commissioned by the Lien Centre in which Singapore was ranked 18 out of 40 countries overall [6]. One of the gaps uncovered is the lack of a government-led national palliative care strategy.

11.6 Summary

Paediatric palliative care has made great strides in Singapore in the last 5 years and has become a recognised and valued service in our hospital. It has, for the ﬁrst time, given patients and their families a choice of place of care and place of death in a non- judgmental and supportive way. The recognition of paediatric palliative medicine as a distinct subset of palliative medicine has led to increasing paediatric representation and membership in various educational and administrative committees in Singapore like the Palliative Medicine Subspecialty Training Committee and the National Strategy for Palliative Care Workgroup. KK Women’s and Children’s Hospital is made a member of the Singapore Hospice Council recently in recognition of its Paediatric Palliative Care Programme. However much more needs to be done.

• Paediatric palliative medicine needs to be integrated into mainstream paediatric practice so that all paediatricians are equipped with basic palliative skills and all children have the right to be given the option of palliative care, regardless of the stage of disease the child is in. Currently many children are referred very late in their disease trajectory or not at all, particularly the children with non-cancer life-limiting illnesses. • If integration into mainstream paediatric practice is done, then it follows that funding and logistic/administrative support comes from the government, rather than the traditional reliance on charity and non-governmental organisations. • The only dedicated Paediatric Palliative Care Programme started in KKH needs to be nationalised to include all children in Singapore. More staff needs to be trained so that the service can be offered 24 h a day, 7 days a week again. 11 Paediatric Palliative Care in Singapore 183

• The subspecialty of paediatric palliative medicine needs to be developed further and made more attractive to young doctors so that more will take on the challenge. Currently the ﬁeld attracts more internists and geriatricians than paediatricians in Singapore. • There needs to be more education and awareness of the public on the subject of palliative care so that death is not a taboo subject and palliative care is not seen as “giving up”. One of the barriers to palliative care in Singapore is the refusal of parents and caregivers to consent to transition of care from curative to palliative or even to concurrent curative and palliative care in the mistaken belief that palliative care hastens death. There is often a cultural barrier in Singapore to honest and transparent discussion between the doctor and the patient/family. • Finally, the last wish on this “wish list” is to have a stand alone hospice for children in Singapore!

References

1. Ministry of Trade and Industry (2011) Singapore in brief. Ministry of Trade and Industry 2. http://www.singstat.gov.sg/pubn/reference/sib2011.pdf. Accessed 2011 3. Department of Statistics Singapore (2011) Statistics: key annual indicators. http://www.singstat. gov.sg/stats/keyind.html#keyind. Accessed 2011 4. Singapore Childhood Cancer Registry Team (2007) Singapore childhood cancer monograph 2003–2007. Singapore Childhood Cancer Registry. http://www.nrdo.gov.sg/uploadedFiles/ NRDO/Publications/SCCR%20monograph%20combined%20v1.4.pdf. Accessed 2011 5. Block S (2011) Interview. American Society of Clinical Oncology newsletter. Accessed 2011 6. Singapore Medical Association (2010) Singapore Medical Association news October 2010, p27 7. Economist Intelligence Unit (2010) The quality of death: ranking end of life care across the world. Economist Intelligence Unit. http://www.lifebeforedeath.com/pdf/Quality_of_Death_ Index_Report.pdf. Accessed 2011 8. The Straits Times (2007) “Dying at home: ministry to look into changing rules.” The Straits Times. September. p 1 9. Shin Min Daily News (2007) “Ministry of Health to study what it will take for more terminally ill patients to spend their last days at home.” Shin Min Daily News. September p 28 Chapter 12 Pediatric Palliative Care in Thailand

Srivieng Pairojkul

Abstract Pediatric palliative care is essential and needs to be integrated early into the care of children who have life-limiting diseases. Perinatal conditions, fatal congenital/genetic diseases and cancers are the leading causes of pediatric death in Thailand. ‘The Tertiary Prevention and Palliative Care Plan’ was included in the National Cancer Prevention and Control Plan 1997–2001. Palliative and end-of-life care has been initiated but principally for adult patients. Parallel pediatric palliative/end-of-life care has been introduced, although principally at tertiary hospitals and regional cancer institutions. Significant obstacles include a lack of systematic guidelines, limited or non-existent financial resources and few (if any) specifically assigned personnel. Access to opioids to treat pain is restricted to tertiary centers and frequently unavailable at primary health care units near to the patient’s rural home. This is problematic since death at home is culturally preferred. Lack of effective pain medication therefore forces patients to remain in hospital to die, which imposes a further financial burden on the family and separates them from community support. Importantly, the concepts of palliative and end-of-life care have not been widely integrated into medical and nursing curricula and more needs to be done to enable healthcare personnel to discern when the treatment should change from the standard curative approach to a palliative one. Pediatric palliative care in Thailand therefore needs (a) strategies for capacity development and education of doctors and nurses (b) adoption of palliative care guidelines and planning/making decisions on acceptable/desired end-of-life medical actions and (c) assignment of a budget/staff to empower palliative care.

Keywords Thailand · Pediatric palliative care · Pediatric pain management · Pediatric end-of-life care

S. Pairojkul (B) Department of Pediatrics, Faculty of Medicine, Khon Kran University, Muang, Khon Kaen 40002, Thailand e-mail: [email protected]

C. Knapp et al. (eds.), Pediatric Palliative Care: Global Perspectives, 185 DOI 10.1007/978-94-007-2570-6_12, C Springer Science+Business Media B.V. 2012 186 S. Pairojkul

12.1 General Description of Thailand

12.1.1 Geography

The Kingdom of Thailand is situated in Southeast Asia (covering 514,000 km2) and bordered by Myanmar, Lao People’s Democratic Republic, Cambodia and Malaysia (Fig. 12.1). Thailand is tropical; rainy and warm. There is a southwest monsoon season from mid-May to September; and a cool, dry northeast monsoon from November to mid-March. The southern isthmus is always hot and humid. The Central region is a plain, and because of the low lying ﬂat topography, many areas

Fig. 12.1 Map of Thailand and surrounding countries Source: Wikipedia 12 Pediatric Palliative Care in Thailand 187 of Bangkok are prone to ﬂooding. Bangkok is subject to land subsidence due to drawing of ground water. The Northeast region is a plateau bounded by mountains and the North and South are mountainous. Thirty percent of the land area is arable.

12.1.2 Population

Thailand (population 65.18 million) has 76 provinces comprising five regions (North, Northeast, Central, Eastern and South) [1]. Each province is subdivided into administrative districts by population. Bangkok (population 6.6 million in 2006) is the capital and business centre [2]. The United Nations Human Development Index ranks Thailand 78 out of 177 countries worldwide (value 0.781). This places Thailand in the group of countries with medium development [3]. About 75% of the population is ethnically Thai, 14% is of Chinese origin, and 3% is ethnically Malay; [4] the remainder belong to minority groups including Mons, Khmers and various hill tribes. There are approximately 2.2 million legal and illegal migrants in Thailand [5]. Thailand has also attracted a number of expatriates from developed countries [6]. The country’s official language is Thai. Its primary religion is Buddhism, which is practiced by around 95% of all Thais. Thailand experienced rapid economic growth between 1985 and 1995 and is a newly industrialized country with tourism, due to well-known tourist destinations such as Pattaya, Bangkok, Phuket, Chiang Mai and Ko Samui, and exports contributing significantly to the economy. Environmental issues include (a) air pollution from vehicle emissions (b) water pollution from organic and factory wastes and (c) soil erosion from deforestation [4].

12.1.3 Health System

The World Health Organization overall health system performance score ranks Thailand 47th among 191 countries. Healthcare in Thailand is mainly provided by the government’s Ministry of Public Health although there is a strong private health provision system. The 30-baht Universal Health Insurance Scheme was introduced in 2001 and became part of the National Health Security Act in 2002. This scheme extended protection to 18.5 million previously uninsured people, resulting in a newly-covered group of 45 million people. Under this scheme, the cost to an individual for any one hospital visit or admission, including treatment, was 30 baht (US $0.98, GB £0.47). The introduction of the universal insurance policy coincided with a shift in funding away from the major hospitals towards primary care. This, in turn, influenced the hospitals’ operational effectiveness and produced large deficits in many institutions. Due to the emphasis on curative care and financial constraints caused by the 30-baht scheme, the development of palliative care was not a priority and it was basically unfunded [7]. 188 S. Pairojkul

12.2 The Need for Pediatric Palliative Care

12.2.1 Children with Life-Limiting Illnesses

Since 2000, Thailand has made significant progress in healthcare service provision. The infant mortality rate fell from 40.7/1,000 live-births in 1984 to 11.3/1,000 live- births in 2006 [8]. In the past, infectious diseases were the main cause of mortality but nowadays – due to improvements in the standard of living and healthcare coverage – the leading causes of mortality in all age groups are cancers, HIV and heart diseases [8]. In the pediatric age group, most mortality occurred during the neonatal period (Table 12.1) and the leading cause of death was from perinatal conditions (45.8%), followed by injuries and poisoning (13.6%) then congenital malformations (10.9%). Apart from these, cancer was the leading cause of death (4.3%) [9] and the majority of children died in hospital (64.2%). The number of deaths from perinatal conditions as per the National Health Security Office report (where mortality cases were collected from all hospitals in Thailand) was greater than the figure from the Central Office for Health Care Information report (Official Mortality Report) (Table 12.1). This inconsistency might be explained by incomplete reporting of infant deaths to the authorities; the official mortality report includes both hospital and home deaths. The difference in numbers between these two sources might reflect the children who die at home. Since no community-based palliative home care system has been developed yet, children who die at home do not have palliative care, which should be an included essential service. The mortality statistics from Srinagarind Hospital (Table 12.2)[10] reveal that the leading cause of death is neonatal conditions (29.1%), followed by congenital malformations including congenital heart disease (24.4%). Cancer and hematologic disease account for one-fifth of the mortality statistics. Accordingly, it is essential that we develop neonatal palliative care to serve this vulnerable segment of the population.

12.2.2 Palliative Care Guidelines

At present, Thailand has no national or academic organizational guidelines for palliative care. Each healthcare center has developed its own guidelines appropriate to its context. Even if they have established and adopted a guideline, it may not have been widely implemented due to the already overwhelming workload of the healthcare team. Unless a specific person/nurse has been assigned palliative care services as their sole task, it is unlikely that there can be continuity of service, which is a significant barrier to the implementation of palliative care. In addition, most pediatric palliative care programs have been developed in teaching hospitals, which have many specialists and a proliferation of subunits. The palliative care program will therefore be implemented quite well among certain 12 Pediatric Palliative Care in Thailand 189 – – – 2735 20.6 ] 9 – – – 3901 45.8 2044 691 14 249 142 69 60 534 6.2 82 275 211 129 106 803 6.1 657 165 77 31 – 930 10.9 688 388 129 89 – 1294 9.8 –––– 19190.2––––55550.4 HospitalAge groups0–30 1–12 1–5 6–12 13–18 1–12 1–5 Official Age groups 6–12 13–18 13–18 Mortality of children between 0 and 18 years of age in Thailand (2007): a comparison between the National Health Security Office Report : Child and Adolescent Health Situation [ infections system malformation Respiratory Other infectionsIntestinal infectionDigestive systemNervous system 32Respiratory 4 systemCirculatory 208 8Neoplasms 23Arthropod–borne 7 8 154 28Genitourinary 12 63 60 – 153Total 15 26 – – 42 77 134 – 52 21 – 22 681 29 68 70 22 21 8 90 4588 42 60 62 39 104 22 961 136 183 273 75 0.5 1.2 62 943 122 20 2.1 3.2 75 261 828 18 19 370 64 34 223 21 3.1 1200 70 4.3 33 0.8 8520 207 52 70 – 223 75 – 47 197 – 119 65 42 28 777 – 27 135 3093 66 – 88 5.8 27 1841 180 163 69 25 2287 88 154 267 508 311 2293 286 32 1.2 194 3.8 2.3 93 3756 2.2 668 386 25 13270 5 2.9 82 0.6 Cause of death Days Yrs Yrs Yrs Yrs Total % Yrs Yrs Yrs Yrs Yrs Total % Perinatal conditions 3843 58 Source Injury and poisoningCongenital – 33 231 237 660 1161 13.6 37 118 977 1252 2827 5211 39.2 Table 12.1 (Hospital) and the Central Office for Health Care Information Report (Official) 190 S. Pairojkul

Table 12.2 Causes of mortality among children 0–15 years of age at Srinagarind Hospital, Khon Kaen, Thailand (2006–2008) [10]

Year Year Year Total number Causes of mortality 2006 2007 2008 (%)

Neonatal conditions (Prematurity, 34 22 26 82 (29.1) Respiratory Distress Syndrome, etc.) Congenital heart diseases 17 5 21 69 (24.4) Other congenital anomalies 5 18 3 Cancer and hematologic diseases 23 24 12 59 (20.9) Infection and other acute conditions 23 19 17 59 (20.9) Chronic diseases (Systemic Lupus 5 4 4 13 (4.6) Erythematosus, AIDS) Total number 107 92 83 282 (100)

pediatric patient groups (e.g., cancer and intensive care), but outside these ﬁelds, other subspecialists may still lack understanding of the concepts of palliative care and skills in pain management.

12.2.3 Barriers to Identifying Children for Palliative Care

Most palliative care programs do not have specific criteria to include/enroll children in the program. Since palliative care services are not usually introduced early in the course of the child’s disease, parents sometime reject the appearance of the palliative team. Transition from curative to palliative care is, therefore, done late and ad hoc. Thus, the palliative care team does not have enough time to get involved and to secure familial involvement; especially in the planning process and relationship building. Since palliative care is not well understood by society, the appearance of the palliative team gives the impression that the doctors are giving up and that the parents should do the same. Life and death decision-making is complex. In Thai culture, many persons get involved in this process. Sometimes the grandparents have more power and therefore it may take a long time to negotiate with every key family member before deciding on an approach. Moreover, Thai culture does not involve children in decision- making as the parents have all the responsibility. Similarly, responsibility for all decision-making for terminally ill elderly patients rests with the adult sons and daughters. When something goes wrong, it is not spoken of directly. Doctors therefore face serious obstacles telling a patient bad news and must inform the family first, leaving the decision to disclose (or not) to the family. In the majority of cases, the truth is not revealed. When the truth is withheld, it is difficult (if not impossible) for the palliative care team to function. Education is urgently needed and not only for health personnel, but also for society at large. If the concepts of palliative care were better understood and patients/families realized they had the right to choose, it would make palliative care 12 Pediatric Palliative Care in Thailand 191 more acceptable and more commonly provided. Foremost, doctors need to learn how to discern when it is appropriate/timely to transform the curative approach to palliative care and how to recognize the needs of the children and their families in the palliative care phase of treatment. A public campaign is needed to make people aware of any patient’s right to information and to recognize children as persons, not objects of treatment, who need to be included in the conversation, albeit using appropriately graded language. In Thailand where pediatric palliative care is not well established and there are few resources, early involvement of the palliative care team is difficult, but the physician should mention the palliative care option when/if treatment fails.

12.3 Settings of Care

There are several functioning pediatric palliative care programs in Thailand; all of which are found in tertiary care centers. Many pediatric palliative care programs have evolved from programs for cancer care.

12.3.1 University (Tertiary) Centers

The pediatric palliative care programs at six university centers are described below.

1. Srinagarind Hospital, Khon Kaen, Northeast Thailand – At Srinagarind Hospital, a teaching hospital in Northeast Thailand, a pediatric palliative care program was started by a group of pediatricians and nurses that were interested in pediatric pain management. The program, established in 2004, started from a pilot project to serve terminal cancer patients. A multidisciplinary team was formed and management guidelines developed. The service expanded to include all pediatric wards and the program is now fully functional as a pediatric palliative consultation team comprised of a pediatrician, a full-time palliative care nurse and a social worker. The program is supported by the Hospital Child Life Program and the pediatric pain team. The current program covers neonates and a program for perinatal palliative care is the next step. The program resulted in the establishment of the Srinagarind Palliative Care Unit, which provides consultative services for the whole hospital and is responsible for education and research on palliative care. A network of groups interested in pediatric palliative care was established in Northeast Thailand with educational support provided by the Srinagarind Pediatric Pain and Palliative Care Program. This network also serves a referral function. 2. Siriraj Hospital, Bangkok, Central Thailand – A pediatric palliative care program at the oldest medical school in Thailand, Siriraj Hospital, grew out of an Oncologic Unit and more speciﬁcally from a counseling/teaching program for pediatric residents (in 2002) that covered some elements of palliative care. Later, 192 S. Pairojkul

in 2007, the hospital setup a Palliative Care Committee that promotes and moni- tors pediatric palliative care activities in the hospital. The hospital palliative care program has a strong homecare team that serves patients in the catchment area of the hospital. 3. Chulalongkorn Hospital, Bangkok, Central Thailand – Chulalongkorn Hospital, a teaching hospital in Bangkok, established a strong palliative care program for children with cancer. A pediatric oncologist there established a foundation called the ‘Wishing Well Foundation’, whose main objective is to improve patients’ quality of life through professional training and the creation of family support groups. The foundation developed a network of qualiﬁed pediatric oncologists and nurses in pediatric palliative care and supported the development of the End- of-Life Nursing Educational Consortium, which involves ongoing professional training. 4. Maharaj Nakorn Chiang Mai Hospital, Northern Thailand – The Pediatric Palliative Care Program at Maharaj Nakorn Chiang Mai Hospital, a teaching hospital in the North, was developed by a pediatric pulmonologist. The services were implemented in its Pediatric Intensive Care Unit. Teaching sessions and case conferences are conducted regularly for the medical students and pediatric residents. 5. Queen Sirikit National Institute of Child Health, Bangkok, Central Thailand – The Queen Sirikit National Institute of Child Health in Bangkok has a comprehensive pediatric palliative care program. The program started as a group interested in palliative care, but was not widely implemented in the hospital until 2005, when a pediatric psychiatrist and a pediatric anesthesiologist led a team of psychologists and a physical therapist in the implementation of psychological support (i.e., art therapy and play activities for palliative patients). The strategy is to develop services in the pediatric wards by educating the nurse and pediatricians who work with palliative patients. 6. Songklanagarind Hospital, Hatyai, Southern Thailand – The pediatric palliative care program at the Songklanagarind Hospital was started by a pediatric oncologist. The faculty’s policy is to encourage all departments to develop their own service and integrate it into their curriculum.

12.3.2 Barriers to Establishing Programs

Working with parents is a key element of the program and requires much time. Relatedly, most pediatric palliative care programs in Thailand lack a formal bereavement program, which is a sensitive and crucial element of pediatric palliative care service. Notwithstanding guidelines and good will, only a few hospitals retain a child life specialist. The implementation of pediatric palliative care guidelines requires the coordination of many disciplines so that care is comprehensive and humanized. If there is no one speciﬁc person taking responsibility for this coordination, the program rarely succeeds. 12 Pediatric Palliative Care in Thailand 193

Finally, there is the issue of specialization territoriality which is competition between physicians and specialists and/or units and subunits within the healthcare institutions. Since almost all palliative care has been set up at tertiary, academically- focused, medical centers there is a constant pressure on the staff to write project grants, get funding, conduct research and publish the research ﬁndings. This competitiveness undermines collegial, interdisciplinary, holistic, humanized medicine. Moreover, the focus of most cancer care has been on pushing the limits of human endurance in hopes of exterminating the cancer, which has meant intentionally using treatments that bring patients very near death. Palliative care is thus seen as giving up and handing off the care to the spiritual.

12.4 Providers of Care

The well-established pediatric palliative care programs in tertiary care centers comprise various disciplines. The team leader is usually a pediatrician. Pediatric nurses, hospital social workers, and psychologists complement the team. No chaplains are included in the team, but a Buddhist monk can be invited from time to time to provide spiritual support. In smaller hospitals, it is mostly the pediatric nurse who organizes the care with support from the general physician or pediatrician if one is on staff.

12.4.1 Provider Education and Training

Palliative medicine has been integrated into the medical curriculum in some Thai medical schools. There is currently no formal post-graduate training or palliative medicine specialization. The Thai Red Cross College of Nursing provides an annual 8-week workshop on palliative care nursing. One nursing school in Bangkok provides a Masters degree course in palliative care nursing. The Thai Medical School Consortium (which includes all Thai medical schools) Palliative Care Network hosts a 3-day national forum, which several hundred healthcare workers attend. Palliative care conferences (with Continuing Medical Education credit given) are organized by many medical schools and are well received. Currently training guidelines or training tools in palliative/end-of-life care have not been developed for formal training of health personnel. Personnel usually attend workshops or conferences organized by the medical schools around Thailand. The Faculty of Medicine at Khon Kaen University developed a training program on pediatric pain and palliative care and trained health personnel from 15 provincial hospitals in the Northeast of Thailand. The program had six sessions: (1) Basic knowledge in palliative care: Concepts, Models of care, and How to organize care; (2) Pain assessment and management with practice sessions on pain assessment and non-pharmacological pain management; (3) Non-pain management and Psychosocial/spiritual care: Emergencies in palliative care, Psychosocial care, 194 S. Pairojkul

Care of the caregivers, End-of-Life decision-making and goal setting, Spiritual care, and Ethical issues; (4) Bereavement counseling and team empowerment; (5) Preparing for a good death; and, (6) Knowledge sharing and network setting. The Faculty of Medicine at Khon Kaen University is presently developing a training module for nurses and doctors in basic palliative care as well as a training module for primary care nurses and community volunteers. Issues relating to children’s pain and palliative care have been broached in the Department of Pediatrics at the Faculty of Medicine, Khon Kaen University. Innovative developments include the Child Life program that includes psychosocial and spiritual support. Hypnosis and other non-pharmacological interventions are employed where they are considered appropriate to relieve certain types of pain [7]. In the near future, it is planned that medical schools will begin to organize postgraduate training in order to produce specialists in Palliative Medicine: this will be an important step to furthering education on the practice and issues in palliative care.

12.4.2 Barriers for Training and Education

Currently there is a huge demand for, and need to train health personnel at every level. The recent implementation of a universal healthcare scheme has overwhelmed services and part of the response has been to increase medical school enrollment. Since there were few resources and personnel for teaching palliative care and the medical curriculum did not have room for this focus, the solution conceived was to set up a special training program. A long-term training program – such as a six- week certiﬁcate course – aims to serve the needs of nurses interested in palliative care and to facilitate their setting up palliative care programs in their respective hospitals, which would include pediatric patients. A shorter course for doctors – with an emphasis on symptom control and communication skills in palliative care – should be developed. A general campaign is also needed to promote acceptance of palliative care.

12.5 Provision of Palliative Care

In Thailand, palliative care and end-of-life care are delivered mainly at tertiary hospitals. Since there is no national policy on end-of-life care (nor budget), the continuity of care from hospital to home is done on a case by case basis.

12.5.1 Palliative Care Services Provided to Children

Most palliative services are not provided by a palliative care specialist, but by a patient’s primary physician(s). The pediatricians who most frequently meet patients needing palliative care are the oncologists and critical care specialists. In Thailand, 12 Pediatric Palliative Care in Thailand 195 these categories of physicians work in tertiary care centers and primarily in medical schools, or large regional hospitals. The majority of them achieve skills in pain management and the concepts of palliative care. Most oncology units have a nurse coordinator and other supportive care. Many pediatric palliative care services are developed in the oncology units and most services are conﬁned to the unit. Services at any pediatric department are limited by personnel resources; particularly the lead pediatrician’s ability to assign time to the development and performance of this service. In reality, all assigned duties take precedence, so palliative care gets short shrift. Care typically provided to pediatric palliative patients (if palliative care service is available) includes: symptom control, and psychosocial support (such as play activities, play therapy and spiritual support). The latter involves religious activities, such as meditation. Many hospitals could recruit volunteers to arrange play activities for the children as well as psychological support for the parents. The ‘Wishing Well Foundation’ provides ﬁnancial support to many oncology units for the arrangement of ‘camping activities’ (dedicated or away time) and support for carrying out the possible-to-do last wishes of the dying children. In most general hospitals, pediatric palliative care service is rare. Moreover, most pediatricians and general physicians lack knowledge of palliative care. Pediatric pain management is a learned skill and one that is lacking among both general physicians and even pediatricians; not surprisingly since pediatric pain management is not part of the general medical or pediatric curricula. In general, skill in the use of opioids for pain control is mostly for dealing with post-operative and procedural pain, not chronic pain management. In addition, there is reluctance to use opioids because of the outmoded ideas about addiction and/or respiratory suppression. Training is needed to raise awareness that opioids are not the danger as physicians once thought. The lack of skills, coupled with the lack of oral forms of opioids in general hospitals, makes pain management for pediatric patients virtually unavailable.

12.5.2 Palliative Care Services Provided to Family Members

Most small pediatric units do not have a social worker. In large units, like those in teaching hospitals, psychosocial support may be provided to family members by a social worker or a child life specialist. Consequently, the provision of information for this realm is usually provided by a pediatrician or general physician and is necessarily limited by their priority duties. There is one pediatric unit in each provincial hospital in Northeast Thailand, each with ∼120 beds. Care in each unit is provided by three to four pediatricians. The burden of the workload makes them too busy to develop other programs. The pediatric nurse therefore plays a critical role in relaying information and providing psychosocial support to the families. Many pediatric nurses in the provincial hospitals are interested in developing pediatric palliative care programs, some with help from the staff physicians, but doctors are not always available to staff the program. 196 S. Pairojkul

Financial support is an important issue as most families are ﬁnancially strapped. Even though medical costs are provided by the National Health Security Ofﬁce, travel costs, lodging and food for the parents are not covered. Most hospital social work units are able to provide only a small stipend used to cover only travel expenses. Some pediatric palliative care units have established family support charities. Respite care does not exist for families. There are, however, volunteer programs where volunteers visit the patients and families in hospital, but not at home. Related to this, bereavement care, which is an important element in pediatric palliative care, is rare.

12.5.3 Home Care Services

Thailand has a strong primary care system and homecare for chronic cases is rou- tinely practiced by primary care nurses. Most of the homecare does not speciﬁcally target pediatric patients; rather it covers all age groups. Palliative care has not yet been recognized and integrated into this system. The Ministry of Public Health has plans to integrate palliative care education into the training course for primary care nurses, so the logical next step is systematically developing and funding palliative homecare.

12.5.4 Care Coordination

Although a homecare program exists in some pediatric palliative care programs, most of these programs were developed in centralized tertiary hospitals, so it is logistically impossible to offer homecare except for the patients who live nearby. The remaining patients need to be referred to hospitals near the patient’s home but unfortunately there is no network for dealing speciﬁcally with palliative care issues. Referrals mostly begin with the physician’s writing a letter for the patient to present at the hospital. Some hospitals have a continuity care unit, which makes referral calls, but two-way communications rarely exist. Moreover, seldom is there any integrated care across healthcare settings and locations. In Thailand, there are currently no hospice or daycare services for children needing palliative care in these facilities.

12.5.5 Barriers to Provision of Palliative Care

Since pediatric palliative care has primarily been developed in teaching hospitals, and mostly in the oncology and critical care units, effort is needed to generate hospital-wide recognition of pediatric palliative care, in tertiary, provincial and 12 Pediatric Palliative Care in Thailand 197 district level hospitals. Education should be provided to the pediatricians, general physicians and nurses on the concepts of palliative care and special issues of the pediatric age group. Pain assessment and management should be thought of as well as the special and unique needs of children needing end-of-life interventions. Tertiary hospitals which have already established a pediatric palliative care program need to develop a teaching program to support other hospitals in their respective regions. Every provincial and district hospital should form a palliative care team, which should address the special needs of pediatric patients. Training of healthcare workers in the community needs to include palliative care with recognition of children’s needs and palliative care should be established in a country-wide fashion. Networking is therefore an essential element of an effective palliative/end-of-life program so that there can be smooth transfer of patients to palliative care and so that patients can die at home with dignity and free of pain.

12.6 Palliative Care Research

There is presently little research on end-of-life and palliative care in Thailand. Studies to date have been mostly descriptive and on adults. As pediatric palliative care is implemented through pilot studies and practice, there will be more opportunity to explore culturally and medically appropriate evidence-based best practices. As with the monitoring and evaluation of end-of-life services to adults in Thailand, the whole system of monitoring and evaluating end-of-life care for the pediatric population needs development and implementation and study.

12.7 Health Policy Reform

Thailand developed a Tertiary Prevention and Palliative Care Plan which was included in the 1997–2001 National Cancer Prevention and Control Plan [11]. The National Cancer Institution is formulating guidelines for palliative and end-of-life care [7]. New legislation introduced in March 2007 addressed the issue of the patient’s right to die in accordance with pre-recorded wishes that exclude interventions such as cardio-pulmonary resuscitation. This approach for adults facing their own death contrasts sharply with that of parents wanting to explore every avenue to extend the lives of their children. In this scenario, the appropriateness of disclosure is a contested issue. Based on interviews, parents do not want their children to know they are dying. This is part of Thai culture: parents tell you what to do. Most children do not have a right to say anything; they just listen to their parents. Since some kind of communication is needed, ways of encouraging parents to tell their children about their disease and death need to be explored [7]. 198 S. Pairojkul

12.8 Highlight on Local Programs

Developing the Srinagarind Pediatric Pain and Palliative Care program, Khon Kaen: as related by the head of the program Dr. Srivieng Pairojkul. As a pediatric pulmonologist interested in working with children in difficult situations, palliative care attracted my interest. In 2004, while working in the Outpatient Department, I heard a child screaming in pain from the Oncology Clinic opposite my examination room. I realized that a lumbar puncture was being done using only local analgesia. We do not have a pediatric anesthesiologist providing sedation and/or analgesia. Since procedures are done right in the ambulatory clinic and children have to return home by city transit the same day, the best approach is to avoid sedation so that the child can walk by him/herself. I kept thinking, ‘Why do the children have to suffer so much? What could we do to reduce their suffering?’ I consulted my close colleague, Professor Karen Olness of Case Western Reserve University, who specializes in self-hypnosis, when she came on a mission to Laos. She visited us in Khon Kaen and helped me to conduct a workshop for doctors and nurses on complementary therapies including hypnosis. The workshop was well received. As a consequence, our pediatric team became interested in pediatric pain management, which developed into a palliative care program. I wrote a small project to support our palliative program. As mentioned, palliative care was not part of our medical training and so we had no idea where to begin. Guided by Professor Olness, we joined the Hypnosis Conference in Singapore in 2004. We also took that opportunity to visit the National Cancer Center and several hospices in Singapore. Upon our return, we drafted a palliative care program. We approached the head nurse and two nurses from each pediatric ward interested in joining the palliative care team. The rest of the team included pediatric anesthesiologists, a social worker, a child life specialist and a pharmacist. Our first mission was to educate the team. Several workshops were conducted to provide the team with knowledge on the concepts of palliative care, pain assessment and management in children and communication skills for palliative care. We also set activities on self-help groups, bereavement care, non-pharmacologic pain management and family conferences. Case conferences were conducted regularly in order to learn to solve problems in our multidisciplinary team. Home visit activities were conducted in conjunction with hospital social workers (Fig. 12.2). When visiting the patients’ homes, we learned that some lived too far to get to hospital and some were without home care service so the parents had to hire a vehicle to bring their children to the hospitals, which was very costly. Local community palliative care services were difficult to find in the community. These findings made us realize that palliative care services should be established in each community to ensure continuity of care. We established pain assessment and management guidelines as well as palliative care guidelines. In the first few years, we mainly concentrated on oncologic patients. We conducted a needs assessment on a group of parents who lost their children from cancer and found many service gaps that need to be addressed. 12 Pediatric Palliative Care in Thailand 199

Fig. 12.2 Dr. Srivieng giving primary care nurse instructions for care plan during a home visit

Most parents stated that they did not want their children to know that they had cancer and were dying. They were afraid that the truth would hurt their children and make them depressed and unable to cope. One parent told us about the ‘breaking bad news technique’. The doctor at the provincial hospital who referred the patient to us casually dropped by to visit the child and the family and said that the child had cancer and needed to have an amputation. She recalled the shock of the news for the whole family. It was not enough to have frank information sharing with families: they actually needed to participate in the decision making and how the news would be shared with the child. All of the families reported that their children’s pain was not well-controlled which made the child’s end-of-life suffering even worse. Support could not be obtained from the local hospitals. Even when the child was near death, the family had to bring the child to our (university tertiary) hospital because they could not obtain pain medication from the local (primary) hospital. Most physicians do not know how to treat chronic pain with morphine; not to mention that the drug is difﬁcult to access at the local hospital level. Most doctors thought that they should not spend their resources on hopeless, terminal patients, which reﬂected the misunderstanding among physicians that their role is solely curative and not palliative. When parents brought a child to the local hospital they could not get proper services. Medical equipment for home use was unavailable so most parents were/are afraid to take their children back home fearing they would not be able to help the children cope with the suffering and other related near-death symptoms. 200 S. Pairojkul

It is important to understand that in the culture Northeast (Isan) Thailand, people should die at home so that their spirits will remain in the house with their ancestors. Parents who wanted their children to die at home had to make the decision to tolerate and ignore their child’s pain, which is as cruel for the child as it is for the parents. There was/is also no bereavement care. One mother was still suffering from depression a year after the death of her child. Most families suffer socioeconomic problems. Some families are in debt (from the cost of treatment, medications and funeral) and some have to sell their land. The centralization of chemotherapy at tertiary care centers exacerbates the economic crisis because of the cost of traveling and the parents’ absence from work. This project (cum pilot study) revealed the gaps in palliative care services in Thailand. It also underscored the issues that should be taken into consideration for achieving effective palliative care services. Our next phase is to extend the lessons learned to other groups of palliative patients. We started to expand the services to non-cancer patients, such as neonates and patients undergoing pediatric intensive care and neonatal intensive care. We are concentrating more on pain management. A pain assessment and non-pharmacological pain management workshop is to be conducted yearly for pediatric nurses. Guidelines have been implemented and different methods of distraction techniques applied on the pediatric wards (Figs. 12.3, 12.4, and 12.5). Pain assessment tools have been made more easily accessible on

Fig. 12.3 Nurse using a distraction technique for venipuncture 12 Pediatric Palliative Care in Thailand 201

Fig. 12.4 Art therapy for palliative patient

Fig. 12.5 Child life specialist and mother distracting/encouraging a child during lumbar puncture 202 S. Pairojkul

Fig. 12.6 Pediatric palliative care network training workshops the pediatric wards. A 1 day workshop is to be conducted for the pediatric residents yearly. In this follow-on phase, we are concentrating on building a network to facilitate resource referrals, to ensure that patients spend their precious end-of-life time at home among family and friends. Fifteen provincial hospitals in Northeast Thailand have joined the network. Six workshops have been conducted to strengthen pediatric palliative care networking skills (Fig. 12.6). A knowledge sharing session helps them to learn what other hospitals have done which stimulates the establishment of such palliative care programs in each of the participants’ own hospitals. The education of the healthcare team needs to be conducted regularly. What we have learned is that all hospitals setup their own programs on a voluntary basis, which results in inconsistent delivery of services due to work overload. Another problem is that hospital administrators are not interested in palliative care since its costs are not reimbursed by the national regime. 12 Pediatric Palliative Care in Thailand 203

12.9 Barriers to Pediatric Palliative Care Services in Thailand

12.9.1 Lack of Palliative Care Curricula

Palliative care in Thailand has only been recognized in the past few years, mostly among persons working in the health sector and primarily those at tertiary care centers or regional hospitals. Since palliative care is not included in the medical and nursing curriculum, most doctors and nurses graduate without any practical knowledge of palliative care. Physicians are the most likely persons to initiate palliative care as soon as it is realized that there is little or no chance that any treatment(s) will succeed. Most physicians, however, consider this a failure on their part and may not want to give up treatments, even if these are worsening the suffering of the patient. On the other hand, some physicians think of palliative care as primarily psychosocial or spiritual support, with which they have little experience, so they leave it to the nurses to do. They do not realize that they should be the initiator of palliative care and responsible for symptom management. Many hospitals in Thailand are interested in establishing a palliative care program, but the majority of them do not have a palliative care physician on the team: the result is that symptom treatment is ineffective. There is therefore an urgent need to integrate palliative care into the medical and nursing curricula. Short courses in basic and advanced palliative care need to be established to provide knowledge and skills to the health team designated to provide these services. Pediatric palliative care should also be integrated into the overall palliative care curriculum and teaching. Guidelines, teaching materials, handbooks, information leaﬂets for children and parents should be made available and easily accessible. Concrete steps should also be taken to integrate pediatric palliative care into both undergraduate and postgraduate pediatric training.

12.9.2 Lack of Community Awareness

There is a general lack of awareness among people in society of the existence of issues surrounding and the need for pediatric palliative care. Most people assume that when treatment fails, the doctors will tell the patient that nothing further can be done, and that the families will then take the patients home to cope with the end of life by themselves. When a doctor mentions supportive care, it is interpreted as the doctor’s plan to withdraw and neglect them, so patients and families insist the doctor care for them and ﬁght until the end. In the pediatric environment, the parents themselves are so disturbed at the prospect of losing a child that they are not willing to surrender and so want everything to be done to save their child. Awareness is needed so that families know that there is an alternative, which provides the sick child quality of life so that they can also die peacefully and the family suffers the loss within the support of their home community. To this end, there is a non-governmental organization called Buddhika Network which runs regular workshops on how to prepare for a good death. This workshop teaches people about death and dying. 204 S. Pairojkul

12.9.3 Lack of Shared Decision Making

In Thai culture, physicians will not break the bad news directly to the patient, but to the family. How a family transfers the information to the patient depends on them. It is quite rare, however, that the family will tell the truth to the patient for fear the patient will lose hope, hastening death. This issue is more pronounced when a child is involved. Moreover, few physicians are trained in how to talk with/to children about dying so they leave this job to the parents. Not surprisingly, parents not only want to conceal the truth, they themselves do not know how to talk about this unthinkable outcome with their children. Relatedly, most care plans are decided upon by the parents and the pediatric patient is rarely consulted. It is therefore important to teach the healthcare team communication skills appropriate for end-of-life. Physicians also need to learn how to communicate with/to children and their families about giving bad news and end-of-life issues. Moreover, a campaign on children’s rights is needed so that children are somehow informed and share in the decision-making. Physicians should encourage and help the parents to transfer the truth to their children.

12.9.4 Ineffective Symptom Control

Symptom control is one of the essential components of palliative care. When dealing with pediatric patients, problems arise with symptom assessment, especially pain. Pain perception is individual speciﬁc, and therefore accurate measurement requires timely, periodic patient participation. Neonates and small children cannot, of course, tell us how much pain they are having. Thus, the measurement of pain symptoms depends upon direct observation of behavioral changes in the child or a report on them from the caregiver. Concerns about drug addiction and respiratory complications from opioid use limits their effective use in children, hence pain control is ineffective. In addition, government control of narcotic analgesic drugs makes access to these drugs difﬁcult and at times impossible. A new national policy is needed to make opioids more easily obtainable for sufferers of chronic and/or terminal pain.

12.9.5 Social Isolation

The quality of life of a child not only involves medical palliative support but also psychosocial support and, if possible, some sort of return to normalcy. Children need and want as much as possible to be back to their normal life. This includes having a chance to play and to be connected with friends and school. Many patients are disconnected from their education due to their prolonged continuous treatment that forces them to miss school. Many parents think that there is no need to continue their children’s education as the child will die soon. This, however, results in social 12 Pediatric Palliative Care in Thailand 205 isolation and the Department of Pediatrics needs to establish a Child Life program to create and encourage play activities and help children connect with school.

12.9.6 Access to Palliative Services

Palliative care services should be available at every level of care, especially in the community. Since most severe or chronic cases are cared for at tertiary care centers or provincial hospitals, networking is especially crucial for sharing knowledge and experience. When palliative care is needed, patients should be able to spend as much time as possible at home; thus, healthcare facilities should open communication channels and make appropriate equipment available to ensure the continuity of care. Palliative care services need to be integrated into the national health security system, so that expenses can be covered or reimbursed. Thailand has established a strong primary care network into which palliative services could be integrated. Education and training of healthcare workers who work in a primary care unit must be made to understand that they fulﬁll an essential role. Effort should be made in building a support system from the district hospitals to the primary healthcare teams, so that there is seamless service and communications.

References

1. National Statistics Office: Statistical Year Book Thailand (2007) Bangkok: National Statistics Office. http://web.nso.go.th/eng/en/pub/pub.htm. Accessed 31 Jan 2010 2. United Nations Population Division (2007) http://esa.un.org/unup/p2k0data.asp. Accessed 15 Nov 2007 3. Report of the United Nations Development Programme (2007) (HDI for 2005). http://hdr. undp.org/en/statistics/. Accessed 11 Dec 2007 4. CIA World Factbook Thailand, CIA World Factbook. www.cia.gov/library/publications/theworld-factbook/geos/as.html. Accessed 22 Feb 2011 5. THAILAND: Burmese migrant children missing out on education. IRIN Asia. June 15, 2009 6. Thailand and the World Bank, World Bank on Thailand country overview 7. Wright M, Hamzah E, Phungrassami T, Bausa-Claudio A (eds) (2010) Hospice and palliative care in Southeast Asia: a review of developments and challenges in Malasia, Thailand and the Philippines. Oxford University Press, New York, pp 87–133 8. Wibulpolprasert S (2007) Thailand health profiles 2004–2007. http://www.moph.go.th/ ops/thp/index.php?option=com_content&task=view&id=6&Itemid=2. Accessed 14 Feb 2011 9. The Royal College of Pediatricians of Thailand (2009) Child and adolescent health situation 2009. Beyond Publishing, Bangkok 10. Srinagarind Hospital, Faculty of Medicine, Khon Kaen University. Mortality report 2006– 2008 11. National Cancer Institute (2011) National Cancer Control Programmes in Thailand. Available at: http://www.scribd.com/doc/45152475/National-Cancer-Control-Programmes- in-Thailand. Accessed May 2011 Part IV Europe Chapter 13 Pediatric Palliative Care in Germany

Christian Lofﬁng, Dina Lofﬁng, Sabine Kraft, Martina Göß, Melanie van Dijk, Tobias Schellenberg, and Hendrik Künzler

Abstract Out-patient children’s hospices and in-patient children’s hospices are the primary care providers of affected families in Germany. The children’s hospice work supplements the existing care structures, acute care hospitals and out-patient care providers, without competing with the aforementioned facilities. It closes an existing care provision gap and consists of out- and in-patient areas of responsibility. The ﬁelds supplement each other in pursuit of their goal to support the families on this path. Support of the terminally ill child and adolescent begins in the early stages, ideally, immediately after the initial diagnosis. Families are supported beyond the death of the child. However, in conclusion, it must be mentioned that the affected children, adolescents, and their families receive a broad spectrum of support by the existence of nine children’s hospices and approximately 90 out-patient children’s hospice services with dedicated full-time and voluntary staff. This should be expanded in the future.

Keywords Germany · Out-patient children’s hospices · In-patient children’s hospices · Pediatric palliative care · German health care system · Terminally ill children · Family situation · Financing of children’s hospices · Psychological stress levels and strains · After-care for children

13.1 Health Care System in Germany

At the end of 2006, Germany had a population of approximately 82.3 million [5]. According to the Bundesverband Kinderhospiz e.V. (Federal Association of Children Hospices, a registered non-proﬁt organization), there are more than 23,000 children, youth, and young adults with terminal diseases in Germany and 5,000 of them die annually [4].

C. Lofﬁng (B) Competence Center for Resource-Orientated Age Research, Hochschule Niederrhein, Fachbereich Sozialwesen, D-41061 Mönchengladbach, Germany e-mail: christian.lofﬁ[email protected]

C. Knapp et al. (eds.), Pediatric Palliative Care: Global Perspectives, 209 DOI 10.1007/978-94-007-2570-6_13, C Springer Science+Business Media B.V. 2012 210 C. Lofﬁng et al.

The primary sectors of the health care system are in- and out-patient health care and the supply of pharmaceutical products. Out-patient care is conducted by approximately 133,000 medical practitioners, including a small group of psychotherapists and 55,000 dentists. There is one practicing physician for every 265,000 people. In urban areas the number of potential patients is greater than the average [1]. The major task of health insurance is to ensure health care for the general population and compensate health beneﬁts. All insured persons are entitled to any type of necessary and preventive medical treatment.

13.1.1 Population

At the end of 2006, Germany had a population of approximately 82.3 million; 65.7 million (79.8%) lived in West Germany, 13.2 million in East Germany (16.0%), and 3.4 million (4.1%) in Berlin, the capital of Germany. Approximately half of the population lives in three of 16 states in Germany: North Rhine-Westphalia, Bavaria, and Baden-Württemberg. On average there are 231 inhabitants per square kilometre. Only the Netherlands (477), Belgium (338), and the United Kingdom (243) have a larger population per square kilometre in Europe. Approximately 31% of the German population live in large cities with a population of more than 100,000 [5]. 15.1 million people (18.4%) are considered to be immigrants. 10.4 million (12.6%) foreign citizens migrated to Germany; 4.7 million (5.7%) are children of immigrants who were born in Germany. Due to the constantly decreasing birth rate, the German population is aging. In 1970, the overall birth rate in West Germany fell below the critical margin of 2.1 births per woman, which is necessary to sustain a stable population structure. Previously, East Germany had experienced a similar condition, but in the 1980s, East Germany returned to a sufficiently high fertility pattern comparable to the pattern in the Scandinavian countries. Immediately after unification, birth rates in East Germany collapsed. They fell to an unsurpassed low level of below 1.0 birth per woman but started to recover in the late 1990s. In the second half of the first decade of the 21st century, the population in East Germany adapted to the West German fertility pattern with a total birth rate of approximately 1.3–1.4 births per woman [5]. In international comparison, a total fertility rate (TFR) of 1.3 is the threshold of the lowest low in fertility patterns. East Germany was below this threshold for 13 years and West Germany for 2 years. According to Goldstein et al., “Stable populations with low mortality and with no net immigration and a TFR of 1.3 take about 45 years to halve” [10]. There is an apparent indication that fertility rates will change significantly during the subsequent decades [1]. Low fertility, a continuously rising life expectancy, and rising longevity of the elderly have changed and will change the structure of Germany’s population in subsequent decades. Further, 4.1 children of each thousand live births die; therefore, Germany has one of the lowest infant death rates in Europe [16]. In 2006, less than 20% of Germans were under 20 years old [1], approximately 20% of the people in Germany were older than 65 years, and 60% were at the 13 Pediatric Palliative Care in Germany 211 working age between 20 and 65 [5], but the majority were 40–50 years old, and the percentage of the 20–30 year old population was relatively low [1]. According to population forecasts, in 2050 only approximately 15% of the population will be under 20, about half of the population will be between 20 and 65, and more than 30% will be older than 65 years of age. In 2050, depending on the scenario, the German population will be reduced to between 68.7–74 million people [5]. As in all countries, the changing age structure of the population (the process of demographic ageing) will cause severe problems for the social security system. A growing number of elderly will have to be cared for, but a shrinking number of the work force will contribute to social security funding. Even 20 years after German unification, the family patterns and the conditions in which children are growing up are very different. In 2006, the classic family was still the most widespread pattern in West Germany: 77% of all families were married couples with children, 6% were cohabiting couples with a child, and 17% were single parents with a child. East Germany showed a different pattern. The share of single parents and cohabiting couples with children was much higher (17 and 25%) and married couples with children still prevailed as the majority (58%) of families. In West Germany, people remain childless or give birth to a minimum of two children; there are two minor children in 38% of families, three or more minors in 12% of families, and in 50% of West German families, there is only one under- age child. In East Germany, about two-thirds of all families only included one minor child, 28% of the families have two children, and 7% have three or more children [5]. The poverty rate of children is above average in both sections of Germany. It is especially high for children of single parents (mothers). More than one-third of all single parent families have been living below the poverty line at less than 50% of the median income ratio [12]. Because single parents prevail in East Germany (a group where single mothers are the factual majority), child poverty is an even bigger problem in East Germany. According to the Bundesverband Kinderhospiz e.V. (Federal Association of Children Hospices, a registered non-profit organization), more than 23,000 children, youth, and young adults suffer from terminal diseases. Annually, 5,000 of this category perish [4].

13.1.2 Health Care System

The primary sectors of the health care system are in- and out-patient health care and the supply of pharmaceutical products. Out-patient care is provided by approximately 133,000 medical practitioners, including a small group of psychotherapists and 55,000 dentists. There is one practicing physician for every 265,000 people. In urban areas the number of potential patients is not as low as the average [1]. Note that in West Germany, the established panel of doctors has an essential position in the German health care system. They handle nearly all of the out-patient care; they generally are the first walk-in center for each layperson who is seeking help. They organize the initial treatment and referrals to hospitals. General practitioners have 212 C. Loffing et al. a special position because they are aware of their patients’ personal situations and are, therefore, able to avoid expensive multiple diagnoses or treatments. More than 2,000 hospitals existed in 2005. The German states must ensure a tailor-made supply of hospitals. They must allocate a sufficient amount of hospital beds in each area. Due to the principle of subsidiarity, they do not own these facilities (except for university hospitals); rather, the communities, non-profit organizations, or private enterprises own the facilities. In the previous years, the number of profit-oriented hospitals has increased. The structure of treatment in these hospitals has also changed in the past years. The number of hospitals, the number of employees, as well as the number of beds in each respective hospital has decreased, especially the number of beds available to pediatric-care and pediatric surgery [16]. Simultaneously, the average number of days a patient remains in a hospital has also declined. On the other hand, the number of cases has increased by more than 12% since 1995 [5]. Bäcker et al. [1] points out that the existing attitude of patients is also important for convalescence. An adequate number of medical staff is required to ensure this. The problem that some patients remain in hospitals because no other adequate facility is available has also become apparent. These patients do not require the high-performance medical equipment of a hospital, but rather, are in need of 24-h assistance.

13.1.2.1 Benefits of Health Insurance The current status of Germany’s health care system has its roots in the social policy reforms initiated by Chancellor Bismarck in the final decades of the 19th century. Today, almost all Germans agree with the socio-political claim that everyone has a right to support in the event of an illness. A correlation between pricing structures and demand, similar to other markets, does not exist. 99.8% of the German population [1] has health insurance that covers the majority of costs in case of an illness. The majority are members of one of the approximately 200 mandatory social health insurance entities. A minority of 8.4 million have private medical insurance and 7.9 million have private supplemental insurance [1]. Below a threshold of C3,562.50 per month, employees are entitled to receive mandatory social health insurance. Employers pay nearly 50% of the fee for social health insurance. Recent politics have decided to freeze the employer’s contribution at 7.3% while the employees must subsidize the rising health system cost. Within the scope of the social health insurance plans (with exception in the private insurance), not only the employees, but also all of their dependent family members are also insured. Employees must spend 13.73% of their gross monthly income on health insurance [1]. Beginning in 2011, and from then on, these costs will increase to 15.5%. For private medical insurance, the contribution rate depends on several factors, such as age, gender, and general health conditions. The major purpose of the health insurance is to ensure the populations’ access to health care and compensatory health benefits. All insured persons are entitled to necessary medical services, including preventive care. The insurance companies are obliged to ensure that everyone has access to all generally accepted medical 13 Pediatric Palliative Care in Germany 213 care. The treatment is not dependent on the amount an individual contributes to the health insurance plan [1]. The benefits of health insurance are to improve health, prevent diseases, obtain early diagnoses, treat diseases with pharmaceutical means and rehabilitate the ill. Therefore, medical therapies, hospitalization and pharmaceutical products are covered to large extent [1], but do require several co-pay fees [1]. The total costs of the health care systems are greater than 10% of the gross domestic product.

13.1.2.2 Benefits of Disability Insurance Anyone who is insured by a health insurance plan also has a mandatory disability insurance plan. The contribution rate is 1.7% of gross income and is subject to payment in the same structure as the health care insurance [1]. In 2006, approximately 1.5 million people received benefits from disability insurance [5]. The benefit amount is dependent on the level of disability as well as on the required care. There are three nursing care levels: compensated care provided by relatives, care provided by non-profit services or commercial homecare services, and in-patient care. The majority of disability-care institutions and services are directed toward the care of the elderly. There are facilities that are designed to care for handicapped children, but hardly any facilities to attend to the needs of terminally ill children, with the exception of the nine hospices that were built for this specific purpose. Specific pediatric palliative care units are being built up at some hospital units, e.g. in Datteln and Munich. These units will provide pediatric palliative care during the crisis of children with life-limiting illnesses. Additionally, two types of in-patient care currently exist, long-term care institutions and institutions for recreational purposes, which require a minimum of one day or one night stay. They are neither specialized in palliative care nor do they take in the family members. In order to receive disability benefits, a person has to be diagnosed to require care for a period of at least 6 months, even if their life expectancy is lower than 6 months. Measures for prevention and rehabilitation have priority over care. Care by relatives or volunteers have priority over in-patient care. Assistance is provided in the areas of personal hygiene, nourishment, mobility, and daily activities, such as cooking and household chores (§ 14, 4 SGB XI: Social Security Statute eleventh book – social disability insurance) [7]. Levels of capacity in these areas are a criterion for the levels of care provided by the health insurance Medical Review Board. The care in nursing homes in particular is very expensive. Not all costs are covered by disability insurance. The remaining portion must be paid from private savings or by the patient’s family [1, 9]. For those without savings and for low-income families, government assistance will cover the costs.

13.2 Terminally Ill Children and Their Families

The broad spectrum of child palliative care is the type-specific indicator of the illness, which can justify palliative care for these children. These illnesses generally require a high level of care on daily basis; a high level of psycho-social support for 214 C. Loffing et al. their family, a high level and non-age-related dependency on the care-giver in view of the imminent death, significant impairment or danger to vital functions, and/or a dependency on palliative medical measures. This results in the family’s continuous psychological and physical suffering. Facing death and dying is an ever-present subject the parents must endure. They face critical situations indicating a near death, from which the child may suddenly recover. This imposes an emotional strain upon the parents and drains them mentally.

13.2.1 Illnesses and Therapy Options

The broad spectrum of children’s palliative care is the type-speciﬁc indicator of the illness that can justify the palliative care for these children. In 1997, Association for Children with Life-Threatening or Terminal Conditions and Their Families (ACT) and Royal College of Pediatric and Health Care in London (RCPH) determined four areas substantiating palliative care for children. These have been adopted by German children’s hospice work as well:

• Group I: Life-threatening illnesses that may or may not be curable. Palliative care may be necessary during the time of uncertain prognosis as well as when curative measures no longer produce results (e.g., in cases of cancer, organ failure, heart, liver and kidney diseases). • Group II: Illnesses requiring long-term, intensive- and life-preserving treatment. This applies to cases of a relatively normal childhood, where death however, could be anticipated at any time (e.g., cystic ﬁbrosis, muscular dystrophy). • Group III: Advanced stages of illness without curative treatment options. This pertains to palliative care that may be required for a number of years (e.g., Neuronal Ceroid Lipofuscinosis-disease (NCL), Mucopolysaccharidosis (MPS)). • Group IV: Severe neurological diseases resulting in general weakness and medical complications, which may escalate unexpectedly, but generally cannot be classiﬁed as progressive (e.g., severe, multiple handicaps, i.e. as a result of brain- or bone marrow damage including children who are suffering from centralized paralysis).

In general these diseases result in:

• a high level of support or care requirement on a daily basis • and/or a high level of psycho-social requirement for the family • and/or a high level and non-age-related dependency on the care-giver in view of the imminent death • and/or signiﬁcant impairment or endangerment of vital functions • and/or dependency on palliative medical measures. 13 Pediatric Palliative Care in Germany 215

13.2.2 Family Situation

After diagnosis of a terminal illness, the grief begins over the child’s advancing loss of existing or acquired capacities. The parents and relatives face the emotional turmoil accompanied by having to accept the facts. It is a severe psychological strain on the parents who have to live with the constant knowledge of facing a permanent parting with their child. This is also enhanced by having to be available constantly and provide physical care; this drains the parents on a psychological level due to the time-consuming intensive care requirements. Daily life is generally organized for the entire family. They are forced to adapt their family life and career to the care and supervision of the sick child and care for possible siblings as well. This often leaves (too) little time to nurture a relationship as a couple. The requirements in these situations greatly inhibit social contacts outside of the family and often result in a high level of organizational effort. At times, parents are inhibited by feeling “tied down”, which does not afford them the ease to “get away” for a while. As a result, former friendships frequently perish. This is further complicated by the fact that the social environment avoids contact because a “dying child” portrays helplessness. In addition, the family’s financial situation is often compromised because, for the most part, at least one parent is no longer able to work as a result of caring for the child. Due to the extraordinary family situation, costs that exceed the services covered by the cost carriers are incurred, such as moving into a handicap adequate dwelling. Faced with this situation, the siblings often grow up in an environment that fluc- tuates between being “overprotected” or being “neglected” [14]. This may result in their being quite independent but also needy children at times. Based on this knowledge, parents frequently worry whether their children are “too functional” on the one hand and on the other hand are “not functioning”. Therefore, raising the child becomes a mission on the edge. Sometimes children are tortured by a secret wish that the brother or sister would finally die. Generally, siblings are not able to find peers with whom they could discuss these stressful situations. Possible reactions are psychological strain, evident behaviors, problems at school, and introversion. The confrontation with dying and death is an everlasting topic the parents must contemplate. They face critical situations where the final farewell appears to be close and from which the child may suddenly recover. This imposes an emotional strain upon the parents that, in turn, drains them mentally.

13.3 Children’s Hospices in Germany

Out-patient children’s hospices and in-patient children’s hospices are the primary care providers of affected families in Germany. The children’s hospice work supplements the existing care structures, acute care hospitals and out-patient care 216 C. Lofﬁng et al. providers, without competing with the aforementioned facilities. It closes an existing care provision gap and consists of out- and in-patient areas of responsibility. The ﬁelds supplement each other in pursuit of their goal to support the families on this path. Support of the terminally ill child and adolescent begins in the early stages, ideally, immediately after the initial diagnosis. Families are supported beyond the death of the child.

13.3.1 In-Patient Children’s Hospices

An in-patient children’s hospice provides an environment for children and their families that is signiﬁcantly different from clinical experiences in hospitals. Although medical and care services are provided here as well, it is not the primary mission. The person, as such, is what counts. A loving, open, and child-friendly environment ensures that despite the terrible diagnosis, happiness and laughter are as much a part of the daily routine in the children’s hospice as grief and the open discussion of the taboo-topic child and death. In-patient children’s hospices are facilities for terminally ill children and their families (children and adolescents under the age of 18, as well as young adults if they desire care). Admission is granted from the time of diagnosis on – temporarily as a support measure – and also during the time of death if the child or young adult cannot be at home or does not want to be at home. Palliative care is guaranteed in an in-patient children’s hospice. Orderlies specializing in childcare and other medical, psychological, and pedagogical capacities support the families. The spatial accommodation in an in-patient children’s hospice is adapted to the need of terminally ill children and their families. It is equipped to provide a place of relaxation and comfort during the sick child’s care and during the stay of their family. Children’s hospices are far different from any hospital atmosphere (See Fig. 13.1). Siblings are involved in all of the activities and experience valuable time with their parents and volunteer staff, who are able to give them their undivided attention (See Fig. 13.2). Parents and children are supported lovingly during the sick child’s ﬁnal stages of life and beyond. Even after the death of their child, families will be openly embraced and supported during their grieving process at the children’s hospice.

13.3.1.1 Locations Currently there are nine in-patient children’s hospices in Germany. Including the planned facilities, the requirements are only covered on a median level [4]. It remains to be seen how the additional requirements for children’s hospices will develop because there are no current scientiﬁcally supported perceptions regarding this matter. At this time the promotion of a requirement analysis has not been politically feasible. 13 Pediatric Palliative Care in Germany 217

Fig. 13.1 Children’s room at the children’s hospice Regenbogenland (Rainbow Land) in Düsseldorf

Fig. 13.2 Care at the children’s hospice Regenbogenland (Rainbow Land) in Düsseldorf

The nine in-patient children’s hospices in Germany are located in:

• Bad Grönenbach (Allgäu) • Berlin • Dudenhofen (in the vicinity of Speyer) • Düsseldorf 218 C. Lofﬁng et al.

• Hamburg • Leipzig • Olpe • Syke (in the vicinity of Bremen) • Wiesbaden

The tenth in-patient children’s hospice will be opened in Thüringen, Tambach- Dietharz in 2011, and Bielefeld may also open an in-patient children’s hospice as early as 2011. The locations of the existing in-patient children’s hospices are marked in blue on the map in Fig. 13.3 and the locations of the pending in-patient children’s hospices are marked in green.

13.3.1.2 Services A myriad of different services are provided by children’s hospice work [8]. Included are the following:

• Palliative medical therapy; in particular pain relief and symptom monitoring • Palliative children’s health care • Support and advisory services for parents and siblings • Therapy selections, such as physiotherapy • Social supervision • Psycho-social supervision • Death and grieving support • Pedagogical supervision for siblings.

The goal of all services is to provide an overall care program to the family.

13.3.1.3 Financing Adult hospices in Germany had existed for approximately 10 years prior to the establishment of children’s hospices. This is why the initial autonomous legal provision for hospices pursuant of §39a SGB V [6], and the corresponding framework provisions for in- and out-patient requirements, did not consider the specific requirements of children’s hospices. Amongst other matters, the increased space requirement, the specific, multi-professional and increased personnel requirement, the necessity of “relief-care”, and the admission and support structure for care-givers and siblings have not been adequately considered in the financial allocations. Generally, a few improvements have been achieved during recent negotiations; the maximum rate of the assessment base has been increased and the mandatory co-pay of the approved daily requirement rate (approved does not apply to full approval of all charges) has been decreased from 10 to 5% in children hospices. The fact that framework contracts are interpreted based on insurance and region, however, leads to significant discrepancies in the practical implementation of federal framework conditions and the contracts with insurance companies on a 13 Pediatric Palliative Care in Germany 219

Fig. 13.3 In-patient children’s hospices in Germany regional level. Consequently, this also leads to a high level of unfairness toward the affected families and ultimately the children’s hospices as well, who generally have to ﬁnance family residences with donations in the event of the costs not being covered. 220 C. Lofﬁng et al.

It is problematic in general to achieve acceptance pursuant of §39a SGB V because children suffering from palliative disease require palliative care from the time of diagnosis onwards (also required for relief-admissions). This is accepted with a great level of reservation by the insurance companies; relief admissions are usually categorized as short-term care, and therefore a much lower daily rate is compensated for a maximum of 4 weeks. Unfortunately, the integration of extended support services beyond the death of a child into the compensation system has currently also not been approved. All support services end at the time of the child’s death, although an extensive support system for the survivors is highly imperative. Additionally, one has to take into consideration, that it seems nearly impossible to enforce a legal segregation of children’s hospice work versus adult hospice work. Lobbying by associations primarily representing the interests of adult hospices proportionally prevails here. The only approved association for children’s hospice work [4], therefore, has not been able to assert its demands for the segregation of the legal provisions. Despite the enormous legal improvements for financing the children’s hospice work in 2010, there is still a large gap between the actual admission costs for the families and the approved reimbursable costs. In addition, one might mention, that unfortunately the subsidiarity principle (private before government sponsored), results in this specific case in a disadvantage because there are many different contracts with many different insurance entities. Therefore, reliable and uniform guidelines and regulations regarding the financial arrangements are almost non-existent. As a consequence, the in-patient children’s hospices must continue to solicit contributions for approximately 50% of their fixed costs, and families that are staying in a children’s hospice are reimbursed differently (in part).

13.3.1.4 In-Patient Children’s Hospice Regenbogenland The children’s hospice Regenbogenland (Rainbow Land), in Düsseldorf, opened in June of 2004 and has eight available spaces for children suffering from an incurable and progressing disease (See Fig. 13.4)[2]. Over 260 families of ill children have been supported in the children’s hospice Regenbogenland. The inquiries increase annually. Currently, up to eight ill children can be accommodated in six single rooms and one double room, and family members can be accommodated in six apartments. Generally, children – from birth up to 18 years hold – are admitted at the children’s hospice Regenbogenland. The families are supported by a multi-professional team consisting of children’s nurses and orderlies, as well as social workers, family and grieve counsellors, a pastor, and therapists. This team works together on a daily basis under the motto, “Don’t give life more days but give the days more life instead” [17]. The primary goal within the scope of hospice care is to provide the families with professional and psycho-social care. This care can be accessed during the ﬁnal phase of life and also for a certain time frame, such as 1–2 weeks for several times a year, for the entire duration of the frequently prolonged course of the disease. The overall care for the children also includes the support of the entire family; therefore, the 13 Pediatric Palliative Care in Germany 221

Fig. 13.4 Front and entrance of the children hospice Regenbogenland (Rainbow Land) in Düsseldorf admittance of parents and siblings is always possible. The guests’ desires and needs are the primary focus of action, regardless of ideology and religion. The team thrives to support the affected families in utilizing the remaining time with their children in a fulfilled and positive manner. The daily routine is designed in consideration of the sick child’s individual resources, desires, and preferences. In addition to the care process, the sick child’s entertainment is the main focus. Some of the options include arts and crafts, music, resting in the dreamland, conversations amongst each other, and excursions to the park, swimming pool, or shopping center (Fig. 13.5). Psycho-social support also plays a significant role at the children’s hospice Regenbogenland. Many of the terminally ill children have a desire to talk about their imminent death or to express their feelings through creative methods. They encounter people at the in-patient children’s hospice who are willing to explore this topic together with them. People who are able to endure the question of why and who can assist in enduring the grieving process simply by listening. Whenever possible the parents of a terminally ill child are supported from the beginning of the diagnosis until the child’s death and beyond. They are often overwhelmed by the situation. In addition to the constant worrying about the sick child, they also have the desire to fulfill the needs of its siblings. In some families this is also elevated by the difficulty to communicate with the partner. Therefore, the parents have very few opportunities in their daily routine to rest and relax. The children’s hospice Regenbogenland would like to afford them the option to relin- quish the care for the child, so they can concentrate on themselves for a while. Consultations, to support parents in difficult situations and accommodate them lovingly during their time of grief, are also optional. This includes individual, couple, 222 C. Loffing et al.

Fig. 13.5 Individual recreation at the children’s hospice Regenbogenland (Rainbow Land) in Düsseldorf and family conversations during which the current worries and problems can be discussed. The sick child’s siblings are not only supported for the duration of the in-patient care but above and beyond as well. The social worker offers a Sibling’s Day once a month. This provides an opportunity for adequate play and game selection, for laughing together, for personal attention, and for great experiences – and it also provides an opportunity to exercise conscious visualization and listening, to possibly enhance the child’s emotional situation through psycho-social interventions, and to show the children that they are not alone in their situation. Additional programs beyond in-patient care include father and mother weekends, the grief café, grieving groups for children, and the monthly family afternoon. The children’s hospice Regenbogenland is operated on donations for up to 90% and only 10% can be charged to health care insurance plans. The annual budget is C1.5 million, which primarily covers the salaries of employees and the in-house operational costs. A vast amount of public relations and fundraising is required to ensure ﬁnancing. However, the families are always admitted free of charge.

Example Case: Elena, Support During the Final Phase of Life Elena was born on October 28, 2009 and developed quite normally during the ﬁrst few weeks. After she was 6 months old, Elena got progressively worse. She had signiﬁcant problems breathing, contracted pneumonia several times, and regressed rapidly. After approximately 4 months of illness, she was 13 Pediatric Palliative Care in Germany 223

diagnosed with a rare metabolic disease (morbus K.). Elena spent a lot of time in hospitals and went back home to her parents on an intermediate basis. Elena was transferred to the children’s hospice Regenbogenland (Rainbow Land) in September of 2010. The doctors conveyed to the parents that Elena was most probably in her final stages of life and recommended the Regenbogenland for final support. The family arrived at the children’s hospice exhausted and torn by grief. The children’s nurses, specialized in palliative care, tended to the baby’s needs in a loving and above all pain relieving manner. Little by little, the parents participated in discussions and gained new strengths. They met a family at the children’s hospice whose child suffered from the same disease. This positively strengthening development soon became apparent in Elena as well. After approximately 14 days, plans to return home were made in collaboration with the parents and an out-patient children’s care service to ensure that proper home care was established. In addition, an out-patient children’s hospice service was also involved to provide relief through voluntary personnel. After 4 weeks at Regenbogenland, Elena was able to return home and celebrated her first birthday. The home care system functioned quite well, and this confirmed by the parents by telephone. Elena relapsed on November 17, 2010, she had already been resuscitated at home twice and the primary care physician recommended the transfer to the children’s hospice with the parent’s consent. The re-admission to Regenbogenland was arranged within a few hours, and Elena and her parents arrived. After arrival the situation defused and Elena spent four very nice days at Regenbogenland with her parents. Elena died on November 22, 2010 – she consciously waited for her parents to be there before she took her last breath in their arms. The parents had previously retired to their apartment to go to sleep and were called back in time by the care team. A grief counsellor arrived the same night to support and accompany the parents. Elena was carried to the farewell room after she had been bathed and dressed by her parents. She remained there for viewing until her burial date. Friends and relative were able to bid their farewell to Elena in the following days and give her final gifts or letters. Elena’s favorite music was streamed into the room and many candles and lights were burned. Together with the parents, the burial was prepared. Elena was to be cremated and her ashes placed in a “peace forest”. They didn’t want a traditional burial ceremony; everything should be tailored to Elena. On the day Elena was picked up from the children’s hospice to be transferred to the crematorium, a farewell celebration with approximately 40 friends and relatives was conducted with Elena in the centre. The parents placed Elena in her coffin, along with all of the items to accompany her on her journey – her favorite stuffed toys, letters, flowers, small guardian angles and a fluffy blanket. They carried Elena out of the farewell room to the hearse accompanied by the visitors carrying lights. 224 C. Loffing et al.

A memorial stone for Elena was set at the children’s hospice atrium; the employees and friends spoke of memories with Elena during this ritual to bid the ﬁnal farewell and to remember the child. In this case the parents accepted the offer of support from the children’s hospice, and they were grateful for not being left alone. They had the option to follow their emotions, desires, and needs and were accompanied throughout the ordeal. They were able to say goodbye in a calm and unhurried manner and to reﬂect on what was right for Elena and their own needs from time to time. Regenbogenland employees will remember Elena and will light a candle at her memorial stone on her death date (See Fig. 13.6), for many years to come, her parents will be supported through consultation and the grief café if they desire.

Fig. 13.6 Atrium at Children’s Hospice Regenbogenland (Rainbow Land) in Düsseldorf

13.3.2 Out-Patient Children’s Hospice Services

Children or young people whose limited life expectancy has been medically diagnosed, as well as their family members, initially and above all require pedagogical and psychological support after a terminally ill diagnosis. Out-patient children’s hospice services directly support the affected families in coping with their everyday lives within their own surroundings through qualified volunteer personnel. Out-patient workers spend time with the sick child, occupy the siblings, are con- versational partners for the family, take over daily tasks, and therefore provide 13 Pediatric Palliative Care in Germany 225 additional time the parents can utilize for themselves. The out-patient children’s hospice services are generally supplemented by in-house childcare services. These services are normally provided on a private commercial basis and covered by insurance companies. However, due to the relatively small target group and the difficult financial provisions, as well as lack of professional personnel, there is unfortunately a large support gap in specialized childcare services for sick children. Volunteer work is an essential component of out-patient children’s hospice work. Professional coordinators prepare volunteers. They are qualified through educational programs and are accompanied for the duration of their services. Volunteers are referred and placed with families by professional coordinators. Volunteers provide an indispensible contribution for improving the quality of life of the affected children and their families with their qualified engagement. The out-patient children’s hospice work directly affects the family system. It strengthens the family system’s resources and enables the parents to walk together with the terminally ill child or young person in a home environment. The referral to in-patient children’s hospices and other professional support facilities is also an integral part of strengthening the family system.

13.3.2.1 Locations Currently, there are approximately 90 out-patient children’s hospice services in Germany. They cover a region of up to a 50 km radius. However, in order to achieve an expansive support system of out-patient children’s hospice services, a great amount of additional development is required.

13.3.2.2 Services The aid and selection of children’s hospice services supplements pediatric services, clinics, out-patients care services, Specialized Out-patient Pediatric Palliative Care (SAPP) teams, in-patient children’s hospices, pharmacies, educational facilities, consulting services, and other service providers. The range of children’s hospice services is an integral part of the overall, continuous, and cross-sectoral support of terminally ill children, adolescents, and their families. Palliative counselling of out-patient children’s hospice services is conducted by a coordinator. It consists of supervising the qualiﬁcation of a professional pediatric palliative care-giver. Out-patient children’s hospice services are interdenominational, independent, and based on the cultural background of the affected families. Out-patient children’s hospice services include the following:

• Palliative counselling: This entails the detailed counselling of the affected family in all corresponding topics regarding the illness. The care-giving family members receive palliative care-related counselling at home as well as instructions for home care, especially when an out-patient care service is not available. In addition, counselling regarding legal matters, support measures and counselling the ethical aspects of palliative care is also provided. 226 C. Lofﬁng et al.

• Information: This entails providing information regarding the entire spectrum of hospice and palliative care for children and adolescents to interested parties, relatives, affected families, volunteers, multipliers, and the general public. • Referral: The referral to professional facilities such as in-patient children’s hospices is another important task. • Support: This entails an initial home visit to an affected family. It is possible to accompany the entire family above and beyond the child’s death upon request. Additionally, the family receives psycho-social support by qualiﬁed volunteers and if desired, spiritual support as well. • Crisis support: This is a specialized service offering grief-support.

Specialized group-services round off the spectrum of services. Event selections for affected parties and relatives are organized. Special services for siblings are also considered. Another supplemental feature is the performance of necessary public relations work, such as lectures and seminars.

13.3.2.3 Financing Out-patient children’s hospice services, which are staffed primarily by volunteers, receive personnel cost subsidies for the coordination specialists. However, these contributions by far do not cover the costs, and therefore the vast amount of ﬁnancing must also be funded by donations.

13.3.2.4 Out-Patient Children’s Hospice Service at the Björn Schulz Foundation In 1997, the Björn Schulz Foundation in Berlin founded the ﬁrst out-patient children’s hospice service in Germany, and set the cornerstone for out-patient children’s hospice work in Germany. The out-patient children’s hospice services include the acquisition and education of volunteers for family support, and their referral to the families of severely and terminally ill children and adolescents. The coordinators ensure that the family receives counselling and refer them to responsible professional facilities if required. Support of the entire family above and beyond the child or adolescent’s death may be provided if desired. The Björn Schulz Foundation’s out-patient children’s hospice services are interdenominational and multicultural. In addition to the aforementioned duties, a myriad of support services for families, which exceeds the out-patient children’s hospice by far, have been developed (See Fig. 13.7). In addition, another in-patient children’s hospice with 12 beds has been available in Berlin since 2002. Here, parents and siblings are supported in grief groups. Services for healthy siblings are offered, and extensive networking is conducted in an effort to support the requirements of families with severely and terminally ill children and adolescents. 13 Pediatric Palliative Care in Germany 227

Fig. 13.7 Selected support programs

The volunteer family support workers for out-patient care are prepared for their engagement within the families by an extensive 9 months, 130 h education program. External lecturers, with a background in psychology and knowledge in hospice work, teach the courses, which have a capacity of 15 participants. In collaboration with the coordinators, they organize the education program to include diverse focus points. A large part of the education consists of topics such as grief, dying, and death and reflecting on personal experiences based on the topic. Volunteers develop communication skills through diverse practical exercises. Specific professional topics, such as illness patterns, aspects of social and insurance legislation, and necessary knowledge pertaining to palliative medicine are taught by external referents. The coordinators are present during the education phase and participate actively. This enables the course participants to gain insight into diverse corresponding experiences. Upon conclusion of the education program, the participants are certified and the first assignment to a family is implemented within the scope of an internship. 228 C. Loffing et al.

In order to accommodate the diverse needs of the families, volunteer selection is conducted very diligently. The main criterion is a stable personality and the conclusion of personal grieving processes. The participants in the courses come from a broad spectrum of occupational backgrounds and ages. The minimum age for participants is 21 years old. The oldest participants are 70 years old. From retiree to bank employees to district attorneys; all groups are represented. This broad spectrum of diverse personalities also ensures the accommodation of the families’ requirements. The family support specialists, including those who are not currently assigned, are supervised by the coordinators. Monthly topic evenings are conducted to offer different specific education programs. Supervisory measures that require mandatory attendance by the support specialists are provided as well. Since the Björn Schulz Foundation was founded, a total of 300 volunteers have attended the educational program through 16 different course sessions. The family support specialists are assigned to families who care for severely and terminally ill children or adolescents in a home environment. They relieve the parents and serve as a contact person and a connective link at the same time. They do not have a pedagogical or care function, but rather donate their time to the families and therefore help create free time for the parents. This enables the parents to attend to matters they would not normally be able to tend to due to the extensive care a sick child requires. The family support consists of three to four hours per week. The aid for the families is free of charge and is organized without bureaucratic constraints. The out-patient children’s hospice services are billed pursuant of §39a SGB V [6]. Beyond this criterion, the additional family care possibilities of the Björn Schulz Foundation are funded by donations. The Björn Schulz Foundation’s work is offered on the assumption that the whole family is affected. Therefore, there are also services for healthy siblings which take into consideration their often-difficult situation. Generally, they must put their own needs on the back burner and forfeit a large amount of parental attention. Regardless of whether it is horseback riding, tower jumping, field trips, or art or music therapy, the siblings are the centre of attention and are able to meet other children and adolescents with similar destinies (See Fig. 13.7). The foundation’s work also puts a large amount of emphasis on family support above and beyond the death of a child. Grieving groups for parents are offered and father groups for grieving fathers are part of the services as well. For children and adolescents who lose a close relative, a grief support group reminiscent of the Dougy Centre in the USA is available. The Björn Schulz Foundation operates an extensive network to enable the accommodation of the needs of families with severely or terminally ill children. Cooperation with clinics, district and youth authorities, and professional personnel from diverse occupational groups is implemented to provide continued and necessary aid to the families. In addition to the engagement of volunteers, which essentially enables the real- isation of a large part of the Björn Schulz Foundation’s programs, there are also a myriad of services that are implemented by full-time staff. 13 Pediatric Palliative Care in Germany 229

13.4 Research Projects

At the Georg-Gottlob-Professorship Foundation for psycho-social interventions in the social services areas of prevention and rehabilitation at the University of Applied Sciences Niederrhein in Mönchengladbach, the certiﬁed psychologist Prof. Dr. Christian Lofﬁng and his associates involve themselves with relevant research questions regarding the out-patient children’s hospice services and in-patient children’s hospices in Germany, among other topics. In the past years two essential questions were the center of the research. Firstly, what must fulltime employees in in-patient children’s hospices endure, and which success factors ensure long-term employment of the staff? Secondly, the evaluation of accompanying projects for children with a limited life expectancy and their siblings was explored.

13.4.1 Psychological Stress Levels and Strains on the Nursing Staff and Home Care-givers in the Children’s Hospice Work Sector in Germany

Under consideration of the psychologically and physically endured situations of families with terminally ill children, the question arose in 2007: What is the speciﬁc endurance level of the fulltime staff in in-patient hospice care facility? In addition, we were interested in potential success factors that would ensure sustainable long- term employment at an in-patient children’s hospice.

13.4.1.1 Study This pilot study from Philipp and Loffing, conducted in 2008, is dedicated specifically to the fulltime nursing staff and family assistants of the purpose-built children’s hospices in Germany [13, 15]. With the support of the Federal Association of Children’s Hospices (Bundesverband Kinderhospiz e.V.), six of the eight existing children’s hospices were included in this study (2007). The aim of the study was to record the inherent stress levels and strains – as well as the staff members’ coping strategies and the resources required to enable them to work in a children’s hospice on a long-term basis. Not only was it possible to make a contribution to the present condition and the long-term health-care of employees, but also to contribute scientific support towards achieving further professionalization in children’s hospice work and to its recognition in society. The primary, as well as the secondary, research assignment was to analyse whether the full-time nursing staff and the family care-givers differed from the standard random example concerning their strain and recreation, their work-related behavioral and emotional patterns, and how they personally experience dying and death. The study was based on a one-factor research design, which comprised the experimental group (hospice) and the control group (norm). The random example of the primary study consisted of 87 persons in the age groups between 21 230 C. Loffing et al. and 60 years old. Due to the absence of research concerning the endurance levels of employees in children’s hospice work, qualitative as well as quantitative data was collected. In a pre-study, the managers of the participating children’s hospices were interviewed with the help of half-standardized interviews and questionnaires. The aim was to find out what experts consider to be the most stressful factors for the employees, how they cope, which of the already available qualifications and further education measures are helpful, and what other measures may be necessary. Based on these results, a questionnaire for the employees was developed. It consisted of parts of the “Recovery-Strain-Questionnaire” [11], the “Work-related Behavior and Experience-Pattern” [18], and the “Questionnaires for Multi-Dimensional Recording of Experiences towards Dying and Death” [19]. In addition, 26 items were newly developed with the goal of gaining a more extensive insight into, for example, stress level, coping ability, and working and organizational conditions.

13.4.1.2 Results The evaluation of these hypotheses showed that, in referring to social tension and emotional strain, the examined random example differed significantly from the corresponding standard random example. These results can be interpreted as risk factors, because the staff members more frequently suffered from arguments and quarrels, as well as from anger, anxieties, or loneliness. It was determined that the examined random example showed a significantly higher ability for distance and a significantly lower willingness to overexert oneself. Furthermore, highly significant results became evident in much lower ranking of the subtest, “Fear of the Death of Important Persons in Your Life”, among nursing staff and family assistants of children’s hospices compared with the standard group. The qualitative results supported the fact that social tensions, conflicts, and lack of exchange of information were the most severe strains for employees, after insufficient working and organizational conditions. Referring to working and organizational conditions, the main factors of strain were lack of structure, unorganized procedures, undefined areas of responsibility, and unreliable working hours. The nursing care for the children and the partly difficult handling of the families were given third or fourth position in the ranking of stress levels. The children’s hospices managers’ assumption was that death and nursing care were primarily stressful. The experts also considered insufficient communication and a shortage of staff to be sources of stress but not social tension and structural conditions. The employees primarily demanded changes in the interpersonal area, such as team work, open communication, discussion, and mutual respect as a measure for coping with stress. As far as structures were concerned, the nursing staff and family care-givers mainly needed reliable working hours, unambiguous areas of responsibility, agreements, and transparency. For themselves, staff members desired, amongst other things, adequate compensation as well as more recognition by colleagues, managers, and society in general. As far as required changes were concerned, the most frequently mentioned aspects were team meetings and 13 Pediatric Palliative Care in Germany 231 activities and also possibilities for self-reflection, relaxation, and reduction of stress. Supervision, which was top priority for the experts, was only given fifth ranking by the staff. As a consequence, recommendations for the areas “team”, “leadership”, “communication and agreements”, “structure and scheduled arrangements”, and “offers” could be developed. Here the focus, amongst others, was concentrated on team development, transparent communication, esteem, flexible leadership, unambiguous distribution of assignments, and good work-life-balance. The results and recommendations of this pilot study can only be a first step towards the further development of the work in children’s hospices and toward a better stress-coping strategy for the staff members. The results should be discussed and critically assessed in every hospice. Only then can it be individually analyzed, what changes are necessary and primarily relevant. At any rate, this study could be a first, big step towards further professionalization of the work in children’s hospices and the preservation of the health of the nursing staff – people who are so essentially important.

13.4.2 Evaluation of the After-Care for Children and Adolescents with Cancer as well as Their Siblings

In addition to the care and support for children with life limiting diseases, the support of the other family members is also an integral part of children’s hospice work. We dedicated two studies to the after-care for children and adolescents. The primary question here was the effectiveness of these projects.

13.4.2.1 Two After-Care Studies In 2010, Loffing, Loffing, Göß und Schellenberg conducted two research projects, financed with the aid of donations at the professorship of the Georg-Gottlob- Foundation for psycho-social interventions in the areas of prevention and rehabilitation. These projects were conducted in the speciality area of social services at the University Niederrhein, with a focus on the evaluation of the after-care for children and adolescents suffering from cancer as well as their siblings [14]. The primary goal of both research projects was to evaluate the intermediate positive impact of after-care travel for children with cancer or children and adolescents suffering from chronic diseases as well as their siblings, by conducting qualitative interviews and implementing quantitative and qualitative questionnaires. The after-care excursions took place at the Rosemarie-Fuchs-House in List on the North Sea island Sylt. The Rosemarie-Fuchs-House is an after-care facility for children with cancer or children and adolescents suffering from chronic diseases and their families. The Björn Schulz Foundation and the children’s hospice Sonnenhof in Berlin organize the researched after-care excursions for children and adolescents with cancer and their siblings on regular basis and supervise these events on site [3]. 232 C. Loffing et al.

The initial after-care excursion evaluated took place in spring of 2010, for 10 days and the attending children were in the age range from 6 to 11 years old. The 13 children who attended the second evaluated after-care excursion in summer of 2010 were between eleven and 15 years old and remained in List for 2 weeks. Both excursions were accompanied by three care-givers on site each time. In order to determine how the sick children, adolescents, and their siblings felt prior to the excursion and to what extent the excursion intermediately impacts their life-situation, several concrete topic area results that were subject to evaluation were contextually reviewed:

• Overall wellbeing/relaxation • Enhancing self-worth/self-conﬁdence/conﬁdence in the own abilities • Enhancing independence/self-reliance/sense of responsibility • Enhancement by interaction with others/in the group

Qualitative as well as quantitative research methods were implemented within the scope of these research projects. Both of the methodical approaches were considered during reviewing and analyzing the children’s diaries and the parent’s questionnaires. In contrast, the parent-interview was based on the qualitative approach. A half-standardized guideline interview containing a query catalogue as framework and enabling the flexible integration of ideas during the process has been developed. During the second after-care excursion, an additional narrative interview was conducted with the older children and adolescents. Initially, special diaries suitable for children and adolescents were conceptualized to gain an in-depth insight (See Fig. 13.8). The diaries were divided into three sections: questions prior to the excursion, questions during the excursion, and questions after the excursion. Open-ended, as well as scale-based, questions were inquired upon. The questions pertaining to the time prior to the excursions were designed to prepare the children and adolescents for the trip and to familiarize them with the diary. The everyday questions during the excursion pertained to the above-listed areas. The four post-excursion questions were designed for reflection regarding the excursion. In addition, questionnaires for each set of parents, to be filled out prior and subsequent to the excursion, were also conceptualized. Both questionnaires consisted of two sections each. The first section consisted of four closed questions and one scale-based question. The second part of the parent questionnaire consisted of three open-ended questions. The questions pertained to the above-listed areas and the corresponding impressions the parents observed in their children and adolescents. In addition, another five open-ended questions for a parent interview, which was conducted after the excursion, were also prepared. This served to evaluate the experiences the parents had with their children after they returned from the excursion and what kind of changes they were able to observe. The actual project process for both after-care excursions consisted of an initial meeting with the attending children, adolescents and their parents at the children’s 13 Pediatric Palliative Care in Germany 233

Fig. 13.8 Children’s diary and diary for adolescents hospice Sonnenhof, in Berlin. During this meeting the parents; each parent separately, filled out the first set of questionnaires (prior to the excursion). The attending children also filled out the first section of the diaries (prior to the excursion). During the first two excursions the children and adolescents answered the questions in their diary in List. The planned mutual meetings after the excursion were also conducted at the children’s hospice Sonnenhof, in Berlin. During this meeting the children had the opportunity to answer the questions (after the excursion) in their diary. The parents received the questionnaires (after the excursion) and filled them out, again each parent individually. The parent interviews were also conducted during this subsequent meeting. After conclusion of the second research project; the excursion for the 11–15 year old children and adolescents, an additional narrative interview with the attending children and adolescents was conducted.

13.4.2.2 Results The primary goal of both research projects, which was to evaluate the intermediate positive impact of after-care travel for children with cancer or children and adolescents suffering from chronic diseases and their siblings at the Rosemarie-Fuchs- House in List, on Sylt, by conducting qualitative interviews and by implementing quantitative and qualitative questionnaires, has been successfully concluded. The evaluated contextual topics were: 234 C. Lofﬁng et al.

With regard to these, it was determined for both excursions that positive changes had been achieved in each of the above-mentioned areas and may be attributed to the conducted excursions in consideration of environmental variables that could not be determined. In the opinions of the children and adolescents (those affected, as well as their siblings) and in the parent’s opinion, each of the evaluated areas showed improvement. The subsequently positive changes lead to the assumption that the excursions have a sustainable, effective impact on the children. Above all, the realization of having their own strength and resources and the knowledge that they are not alone in their fate seems to have strengthened the children (at least) intermediately in their everyday life. In part, the parents observed significant improvements, indicating an increased self-confidence level as well as increase in social competences. The independence of many children has also significantly improved. The results of the findings for both excursions can be summarized as follows:

• The medium-term effect of the after-care excursions has been established. • All of the children and adolescents benefited from the excursions, some quite significantly. • The well-being of all children and adolescents is significantly better after the excursions than prior to the excursions. • The excursions indicated a significant influence with regard to the children and adolescents increased independence as well as increased self-confidence. • The development of new friendships and interaction with other children who share a similar fate are of significant relevance to the children and have been promoted decisively by these excursions. • The communication amongst each other was of higher value to the older children and adolescents than to the younger travelers and was perceived as very enriching. • Due to documenting the expectations, experiences, and emotions, a higher level of awareness regarding the goal of the excursions and their own well-being and strengths has been achieved by the parents as well as the children.

Overall, these types of after-care excursions can be described as very effective. The interaction with other children and adolescents of similar fate is highly recommended. The down-time from every day routines without family and the togetherness in a different environment are important aspects for those affected children and adolescents. 13 Pediatric Palliative Care in Germany 235

13.5 Prospect – Perspectives of the Children’s Hospice Work in Germany

The legal entitlement for specialized out-patient palliative care in Germany was anchored by the healthcare reform in 2007. More specifically, terminally ill patients will receive the necessary medical and care services and may remain in their familiar environment. Palliative care teams, who take care of the patients, are available around the clock if needed. These services primarily consist of medical and care services and include pain relief and relief from other corresponding symptoms. A multi-professional team consisting of medical and care-giving professionals coordinates the case. Unfortunately, the legislation does not stipulate the inclusion of psycho-social professionals. It was stipulated only that palliative care teams must collaborate with the local children’s hospice services. This legislation resulted in the establishment of palliative care teams on a practical level; yet far away from a Germanwide coverage due to insecure finances, the high costs of specific children’s palliative care teams, and high standards of qualifications expected to be within these teams. The framework requirements for pediatric palliative care teams are significantly more disadvantaged than the adult teams. The primary goal was, and still is, to assess that the palliative care for children cannot just be assumed by adult teams. It has to be established time and time again that, due to the small target groups and the economic cost and use calculations, children require independent care and therefore different conceptual care indicators are necessary. Professorships for pediatric palliative care have also been established in Germany, one in Datteln/Witten-Herdecke with Prof. Dr. Zernikow and one in Munich with Prof. Dr. Führer. These two centres for pediatric palliative care in the southern and western regions of Germany strongly impact on politics to provide an independent right to specialized pediatric palliative care for children. In cohesion with this incen- tive, several children’s hospitals, mostly university clinics, are about to establish pediatric palliative care wards and slowly a network of pediatric palliative care is being established, which includes all care aspects. Coupled with the difficult situation of cost coverage for pediatric palliative care wards, and with in- and out-patient children’s hospice services’ financial worries, which result in competition within the childcare system for donations – the above factors contribute to the issue that pediatric palliative care must not only compete with the interests of adult palliative care, but also must constantly justify the children’s entitlement to independent pediatric palliative care. This situation may result in competition and segregation within the pediatric palliative care system as such. Unfortunately, the necessary solidarity required for all involved in the pediatric palliative care sector in Germany is still far away from realistic unification. Pediatric palliative care in Germany can be implemented area-wide and all- inclusively only after all involved corner stones are specifically determined (outpatient, in-patient, palliative wards, children care services, and others) and after politics and the cost carriers improve the legal frame work provisions to an extent where only a small share of donations, such as 5%, is required for all services. It is 236 C. Loffing et al. desirable that children, adolescents, and young adults (if they desire) have a right to specific palliative care that is reachable, appropriate and specific to their age and developmental stage. The fact that specific services for children always face controversy is the expression of a society that places economic feasibility above the quality and entitlement of children in palliative situations. In view of the direction that population development is taking, the problem of children as a minority group will continue to escalate. It will be of increased significance that a consolidated children’s palliative care association fights for an equally high level of palliative care for this minority, as is available for adults. Therefore, the association’s work pertaining specifically to the children’s interest must gain more political recognition. However, in conclusion, it must be mentioned that the affected children, adolescents, and their families receive a broad spectrum of support by the existence of nine children’s hospices and approximately 90 out-patient children’s hospice services with dedicated full-time and voluntary staff. This should be expanded in the future.

References

1. Bäcker G, Naegele G, Bispinck R, Hofemann K, Neubauer J (2010) Social politics and social status in Germany. Part 2: health, family, age and social services, 5th edn. VS Publishing, Wiesbaden 2. Children’s Hospice Rainbow Land (2011) The house [in German]. www.kinderhospiz- regenbogenland.de. Accessed 2011 3. Children’s Hospice Sonnenhof (2011) Information [in German]. www.bjoern-schulz-stiftung. de 4. Federal Association for Children’s Hospices (2011) [in German]. www.bundesverband- kinderhospiz.de. Accessed 2011 5. Federal Ofﬁce of Statistics (2008) Data report 2008 [in German]. A social report for the Federal Republic of Germany. BpB, Bonn 6. Federal Republic of Germany (1988) Statutory health insurance. Social Code Book (SGB) V [in German] 7. Federal Republic of Germany (1994) Social disability insurance. Social Code Book (SGB) XI [in German] 8. Fundamental documentation regarding in- and out-patient children’s hospice work (2005, 2010) 9. German Parliament (2008) Fourth report regarding the development of disability insurance. Print 16/722 [in German]. German Parliament, Berlin 10. Goldstein JR, Sobotka T, Jasilioniene A (2009) The end of “lowest-low” fertility [in German]? Pop Dev Rev 35:663–669 11. Kallus KW (1996) Recovery-strain-questionnaire [in German]. Swets Test Service, Frankfurt a.M. 12. Lampert TH, Hagen CH, Heizmann B (2010) Health discrimination against children and adolescents in Germany. Contributions to the Federal Health Report [in German]. Robert Koch Institute, Berlin 13. Lofﬁng C (2008) Psychological stresses and strains of nursing staff and home carers in purpose-built children’s hospice work in Germany. First results of a pilot study. ICPCN Network News 1:3–4 13 Pediatric Palliative Care in Germany 237

14. Loffing C, Loffing D, Göß M, Schellenberg T (2010) Evaluation of the after-care for adolescents suffering from cancer as well as their siblings [in German]. University of Applied Sciences, Niederrhein, Mönchengladbach 15. Philipp D, Loffing C (2008) Psychological stresses and strains of employees in purpose- built children’s hospice work in Germany [in German]. A pilot study. University of Applied Sciences Niederrhein, Mönchengladbach 16. Robert Koch Institute (2007) Health in Germany contributions to the Federal health report [in German], 2nd edn. Robert Koch Institute, Berlin 17. Saunders C, Baines M (1991) Life with death. Support and medical treatment of terminally ill people [in German]. Hans Huber, Bern 18. Schaarschmidt U, Fischer AW (2006) Work-related behaviour and experience-pattern [in German]. Schuhfried, Mödling 19. Wittkowski J (1996) Questionnaires for multi-dimensional recording of experiences towards dying and death [in German]. Hogrefe, Göttingen Chapter 14 Pediatric Palliative Care in Ireland

Colette Cunningham and Philip J. Larkin

Abstract This chapter describes how pediatric palliative care functions in the Republic of Ireland. Although pediatric palliative care is a recent development, it has the beneﬁt of an agreed policy on the way forward for pediatric palliative care. This chapter provides a critical appraisal of the policy and the particular challenges in terms of how its recommendations resonate with the larger policy dimensions of palliative care in Ireland. It highlights the case of two well known pediatric programs that offer pediatric palliative care services to children in the Republic of Ireland.

Keywords Ireland · Needs assessment for PPC · National pediatric palliative care policy development

14.1 Introduction

The Republic of Ireland (Ireland) is located in Western Europe, occupying ﬁve- sixths of the island; the remaining one-sixth consists of Northern Ireland, a constituent of the United Kingdom. It consists of four provinces: Leinster, Munster, Connaught and part of the province of Ulster. The Republic has a total area of 70,282 km2 (27,136 sq, mi). According to a recent census, the population of Ireland is 4,470,700 [1]. Ireland is a constitutional republic that is governed as a parliamentary democracy with an elected President serving as Head of State [2]. It is a highly developed country with the ﬁfth highest Human Development Index and the highest quality of life in the world. The country is also highly ranked for press freedom, economic freedom, democracy and political freedom. It is a member of the European Union, Council of Europe, Organization for Economic Co-operation and Development (OECD), World Trade Organization (WTO) and the United Nations (UN).

C. Cunningham (B) Department of Epidemiology and Public Health, Brookﬁeld Health Sciences Center, University College Cork, Cork, Ireland e-mail: [email protected]; [email protected]

C. Knapp et al. (eds.), Pediatric Palliative Care: Global Perspectives, 239 DOI 10.1007/978-94-007-2570-6_14, C Springer Science+Business Media B.V. 2012 240 C. Cunningham and P.J. Larkin

14.2 Health System and Policy

The public healthcare system of Ireland is governed by the Health Act 2004, which established a new body responsible for the delivery of health and personal social services to the Irish population – the Health Service Executive (HSE). The new national public health service came into being on 1st January 2005. It works under the Irish government’s Department of Health and is directly responsible to the Minister for Health and Children. The Department of Health is responsible for the formulation and evaluation of policies for all health services. It supports the ofﬁce of the Minister for Health and Children and has a role in the strategic planning of health services. This is carried out in collaboration with the HSE, voluntary service providers, government departments and other interested parties. All persons resident in Ireland are entitled to receive healthcare through the public healthcare system, which is managed by the HSE and funded by general taxation. All maternity services and care for children up to the age of 6 months are free of charge. Special assessments and diagnostic tests are provided for free. In addition there is a free medical care system in place for all those receiving welfare, low income or suffering from chronic illness. This is known as a Medical Card and entitles holders to free hospital care, general practitioners visits, dental services, optical services, aural services, prescription drugs and medical appliances. People who are not entitled to a Medical Card must pay fees for certain healthcare services, for example there is a charge for Emergency Department services if the client is not referred to the Department from a family doctor, in-patient hospital charges at a daily ﬂat rate of C100 per day up to a maximum C1,000 in any 12 month period irrespective of the actual care received. However, if a patient cannot pay hospital fees then the HSE will provide the services free of charge [3–4]. In addition to the public-sector healthcare there is a large private-sector healthcare market.

14.3 Children’s Palliative Care in Ireland

Although a recent development, Ireland has the beneﬁt of an agreed policy on the way forward for pediatric palliative care. In this section, we provide a critical appraisal of the policy and the particular challenges in terms of how its recommendations resonate with the larger policy dimensions of palliative care in Ireland.

14.3.1 A National Policy for Pediatric Palliative Care

The development of an Irish pediatric palliative care policy is reflective of the voluntary-statutory partnership which has been a key feature of palliative care 14 Pediatric Palliative Care in Ireland 241 service developments across the Republic of Ireland.1 The document ‘Palliative Care for children with life-limiting conditions in Ireland – a national policy’[5], was initiated by The Irish Hospice Foundation, a not-for-profit agency which supports and promotes hospice and palliative care philosophy. The initial impetus to examine pediatric palliative care needs arose from the findings of the Report of the National Advisory Committee on Palliative Care [6]. In this report, the needs and parameters of care for children with life-limiting illness were acknowledged thus: ...The needs of these children differ from the needs of adults. A significant proportion have long-term needs and many live with significant disability. The needs of their families may also be more complex. Respite care is an important element in the care of children with life-limiting conditions. Children also have a need for continuing education. An expert committee, established by the Faculty of Pediatrics, is currently examining the future delivery of palliative care services to children in Ireland (p. 11). In effect, the adult-focused report, which was termed the ‘blueprint’ for palliative care in Ireland, highlighted the need to address palliative care for children but as a process to examine pediatric palliative care was proposed, the issue was highlighted rather than addressed. However, in light of international best practice at that time, the report went on to make two important recommendations that did underpin the discussions of the pediatric group:

• Pediatric palliative care should be essentially home-based wherever possible • Pediatric palliative care should be delivered by professionals primarily qualiﬁed in pediatrics

These important principles underpinned an initial roundtable discussion, chaired by the Irish Hospice Foundation on how to develop children’s palliative care. Participants included statutory and voluntary providers of child and family-centered care, such as the Jack and Jill Foundation, Nurse for Daniel, The LauraLynn Foundation and Barnardos, each of whom held a particular focus on the development of supportive care and bereavement services for such children. International speakers on the clinical management and service delivery of palliative care to children were also invited. The outcome of the day led to two important considerations. Firstly, there is limited, if any, Irish data regarding the types of children who may require palliative care services. Secondly, the international evidence regarding the benefit of children’s hospices (or more particularly, in-patient units) is inconclusive. Given the disease spectrum of children with life-limiting illness, clinical data could be held by disparate statutory care providers and in a variety of formats, although it is acknowledged that many children come under the remit of disability services. There is no single database in which these children could be identified and flagged

1 The policy applies solely to the 26 counties which constitute The Republic of Ireland. The six counties of Northern Ireland are deemed a province which comes under the jurisdiction of the United Kingdom and therefore the British National Health system, although some aspects of their health policies are managed regionally. 242 C. Cunningham and P.J. Larkin as having life-limiting illness with a possible need for palliative care input. Second, at the time of the roundtable discussion, it was reported that a number of United Kingdom based children’s hospices had closed down, partly due to the underuse of beds and an emphasis on homecare as the best model of care. Further, for chari- tably funded hospices, links to statutory healthcare providers were variable. Since it was given that some of these children may require a life-sustaining intervention despite their illness, there was a need for clear partnership and expertise links with a local hospital to mitigate against risk. In brief, the meeting concluded that there was a need for more evidence on the sustainability of children’s hospice and that their development in Ireland was to be approached cautiously and probably best avoided.

14.3.2 Palliative Care for Children in Ireland – A National Needs Assessment

In 2005, the Department of Health and Children, Faculty of Pediatrics and the Irish Hospice Foundation commissioned a research group to undertake a national needs assessment of children with life-limiting illness in Ireland [7]. This study provided the framework on which the eventual policy was based. The needs assessment utilized a multi-faceted approach, including identifying epidemiology data on the numbers of children and range of illness in accordance with the four-level framework on children most likely to have palliative care needs [8]. The study was based on the principles laid down by the World Health Organization definition of palliative care for children [9] and framed by a National Children’s Strategy which championed for a voice for children in decisions regarding their care in relation to their comprehension and maturity. Epidemiological data suggested that 66% of all childhood deaths were due to life- limiting illness and of these, 71% occur within the first year of life. Furthermore, 53% of deaths in this first year occurred within the first week of life. However, in the absence of a national database in Ireland or indeed any other country at the time of the report, a conservative number of 1,400 children living with life-limiting illnesses was proposed. However, the lack of conclusive data meant that these figures are likely to be underestimated, not least because of the legal prohibition of termination of pregnancy in Ireland. The Irish children’s needs assessment reflected many of the challenges to pediatric palliative care noted in comparative international needs assessments. These included inadequate community-based resources, poor inter-professional communication, and services overly focused on cancer when children most in need of palliative care would come from the spectrum of progressive, irreversible disease [8]. Further, even though home would be considered the preferred place of care, the lack of essential respite services remains a weakness in service provision globally. The key findings of the needs assessment also indicated that the positive development of pediatric palliative care services was dependent on better equity and greater co-ordination in service provision, improvement in the education and training of healthcare professionals and improved bereavement support with specific note 14 Pediatric Palliative Care in Ireland 243 for the needs of adolescents in terms of care and support. A key recommendation of the needs assessment was that a ‘key worker’ should be appointed to act as co-coordinator of the case.

14.3.3 Core Components of the National Policy

As would be expected the policy reflects international best practice in the care of children with life-limiting illness. Key to this are four principles which determine the scope and focus of the policy; Inclusiveness, Partnership, Comprehensiveness and Flexibility. In common with many healthcare developments in Ireland, a National Development Committee for Children’s Palliative Care will be developed with the aim to provide a national forum for the integrated development of services and to reflect local variation. The predominantly rural nature of Ireland with disparate access to services and specialist care services in particular, means that centrally managed outreach program such as this need to take into account the local provision and to match individually assessed need to local resources. Structural deficits still exist in terms of geographical access to care services (all major children’s hospitals are predominantly Dublin-based- Ireland’s capital), leading to limited opportunity for education and training for local clinicians and limited evidence of planned integration and co-ordination of services and bereavement care in some localities. It is also important to note that the policy was prepared amidst the proposals for a new children’s hospital situated in the middle of Dublin city. Notwithstanding the complexities associated with this endeavor, it is clear that a sustainable critical mass of pediatric-orientated clinicians would enhance and support children’s palliative care. It is therefore proposed that an outreach specialist consultant-led service be developed from within the new hospital. The interdisciplinary team proposed would be relatively small (physician, specialist nurse, social worker and administrator), but with access to the wider healthcare team including, play therapy, dietetics and physiotherapy. At the time of writing, the lead physician is appointed and due to take up post in one of the existing children’s hospitals initially and although the new hospital development is proceeding, the current economic crisis may yet influence the final configuration of services. Given the strong voice for care-at-home, the policy also proposes that Children’s Outreach Nurses be appointed. Eight nurses, based across the country will provide a support service to both adult-focused palliative care team and standard children’s care services (hospital and community) in relation to pediatric palliative care, as well as hold an education commitment to the wider community who may have clinical input into child and family life at various times (such as maternity, neonatal care etc.). It is proposed that this nurse would carry a caseload but work in conjunction with clinical partners who deliver care at local level, such as community nurses and voluntary agencies described earlier. At this time, only one nurse is currently in post, based in a Dublin hospital outreach post but it is expected that the majority of these posts will be appointed and filled by the end of 2011. A clinical supervision and 244 C. Cunningham and P.J. Larkin advice remit from the lead physician will be included to support these locally based practitioners. Given the decision not to support the development of a children’s hospice for Ireland in this policy, the need to develop ‘hospice-at-home’ services is the model of choice. This development does not preclude in-patient hospice development, but the aim of such care would be respite-orientated, rather than for terminal care. The decision to choose ‘hospice-at-home’ would be based on a detailed care plan being established for the child and family. Again, the option to link into existing childcare services within a local region would be essential to the success of the program. In education at least, there have been some positive developments with programs developed and in the process of development that reflect best practice across Europe and which will meet the needs of basic, advanced and specialist learners [10]. Our Lady’s Children’s Hospital, Crumlin, Dublin is one of the largest children’s hospitals in Ireland. It provides education to children in their care especially suffering life-threatening illnesses. They have a specialist school that is funded and regulated by the Department of Education and Science and it provides:

• Primary education, textbooks, resources and materials in line with the National School Curriculum to all school-going children aged 4 years and over • Secondary textbooks, resources and materials for pupils up to Transition Year • Multi-sensory room • Computers, educational programs • Supervised internet access and e-mail • Video conferencing with the other Irish hospital schools • A beautiful child-friendly garden.

They have a dedicated education team of three teachers and a special needs assistant. This program is however an exception rather than the norm in Irish children’s hospitals. Naturally, in the context of child care, the issue of school education for this group of children is addressed through the ideal of continuing in the family’s preferred location for as long as possible and tailored to the child’s physical, emotional and cognitive development.

14.3.4 Professional Education and Training in Pediatric Palliative Care

The Palliative Care policy states that: in order to ensure that children with life-limiting conditions receive appropriate care, both basic and ongoing education and training of staff is essential. A framework exists upon which children’s palliative care education programs for all healthcare workers, professional and non-professional can be based. Education programs should extend to all members of the interdisciplinary team and where possible, a multi-professional approach to education should be implemented. This could include the development of a core module of integrated learning for all healthcare professionals (p. 36) [5]. 14 Pediatric Palliative Care in Ireland 245

Trinity College Dublin, The University of Dublin, will commence three interdisciplinary modules in children’s palliative care in September 2011. The modules are open to all healthcare professionals who care for children with life limiting illness and their families and will cover topics such as; legal and ethical issues in children’s palliative care; leadership and team working; pain and symptom management; organization and management of family-centered children’s palliative care services; bereavement support and working with families. The modules are funded by the Irish Hospice Foundation.

14.3.5 Critical Reﬂections on the Policy Development

The current economic downturn in Ireland and its impact on the public sector, healthcare employment, workforce planning and education and training opportunities is considerable. The issues outlined above became the framework upon which the final policy of the Department of Health and Children 2009 was constructed. However, in worsening fiscal times, even with dedicated budgets, it remains to be seen how much of the ‘aspirational’ policy will eventually be translated into practice. There are some significant challenges to be overcome. Certainly, the establishment of a database and the collection of relevant health data on children with life-limiting illness is costly and currently complex in the way in which Irish data is currently stored and recorded. For example, it is envisaged that hospital visits may afford one level of information as would national mortality statistics. Given the community focus, the number of hospital visits may not reflect a true picture of need and mortality statistics taken from death certification would not necessarily clarify that the child would have been in receipt of a palliative care input. There is a need for an integrated system of shared information between disability services and palliative care/pediatric care in order to develop meaningful packages of care management. Perhaps an area that is yet to be addressed is the interface between the regionally- based Children’s Outreach Nurses and the existing palliative care teams. Currently each of the 26 counties of the Republic of Ireland has access to various levels of palliative care support, including hospital, hospice and community care. Clearly, these services have been adult focused but in the absence of a service for children, many have developed well structured care programs for children in their local community. Notably, however, they were not involved to any great extent in the development of the policy. How the new posts will interface with existing and well-established services and how these nurses will ‘feed-in’ to the central service/team in Dublin warrants further reflection. One positive development has been the setting up of a committee on pediatric palliative care within the Irish Association for Palliative Care, who represents the views of the vast majority of palliative care providers in the country. In so doing, they seek workable models of shared care that are meaningful to practitioners, families and children. Similarly, the work of these posts and the children’s palliative care initiative in general will need to develop shared care protocols with the voluntary agencies which currently provide that care. The policy has been widely welcomed by these groups as a conduit for the structure of home 246 C. Cunningham and P.J. Larkin care and respite care program. The work of these voluntary agencies to date has been immense and their continued collaboration would be key to success. Despite the limited and contradictory evidence on children’s hospice, the development described above is proceeding. The challenge will be how many children will use the facility. As it is not supported in the policy, there is little likelihood of other in-patient developments being approved. This hospice will be based in one locality in Dublin and therefore may be perceived as of limited use to families living in other parts of the country. This remains to be seen. What is evident is that this initiative responds to an important need for respite care. The LauraLynn Foundation has developed from the work of a mother whose two children died and who, at the roundtable meeting in Dublin made the significant point that for some parents, home care is not always the most appropriate option. Sadly, the lack of visibility for a hospice in the policy means that it must look for charitable rather than statutory funding to develop. Again, the current economy may have an impact on how well this progresses in the near future. What is most positive about this policy is the fact that it advocates for integrated care pathways which provide a logical framework of care for a child and family from diagnosis through to end of life and bereavement care. It demonstrates the critical essence of shared care, led by pediatric experts, supported by palliative care clinicians where needed and has the capacity for local adjustment. With all the challenges that this new development for Ireland poses, directing care planning using this valuable and well-presented framework has the potential to strengthen and enhance the care of children with life-limiting illness for the decades to come.

14.4 Case Studies – LauraLynn House and the Jack and Jill Foundation

Two voluntary providers of child and family-centered care have been selected to highlight some of the services being offered to children and families in Ireland. These are the LauraLynn House and the Jack and Jill Children’s Foundation.

Case Study: LauraLynn House, Children’s Hospice The LauraLynn Children’s Hospice’ Foundation was set up in 2001 as a result of an enormous personal tragedy in the lives of one couple Jane and Brendan McKenna which saw them lose both to their precious daughters Laura and Lynn in the space of just 2 years. LauraLynn House (Hospice) is all about improving the quality of life of children with life-limiting illnesses. It is about making the best of the sick child’s life, no matter how long, short or difﬁcult it may be. LauraLynn House motto is about ‘putting life into a child’s day- not days into a child’s life’ [11]. 14 Pediatric Palliative Care in Ireland 247

LauraLynn’s House will offer respite and care for the families of sick children giving them the possibility of having a much needed break in a ‘Home from Home’, ‘Family to Family’ environment. The staff at LauraLynn House assists families with the care of their sick child so that they can have some respite from the burden of care and also spend quality time with their sick child and other well children. It allows families to get away from their 24 h cycle of constant care and all the associated worries. They can enjoy sharing with other families who understand the challenges they face caring for a sick child. Alternatively, LauraLynn House offers families an opportunity to leave their sick child in the care of LauraLynn staff so that they can take that much needed break away –that holiday they can rarely take with their well children. Knowing that their sick child is in safe hands and with its ‘other family’, being loved and cared for as they would do offers the family peace of mind. LauraLynn House is all about choice and offers families the possibility to have their child taken care of by a proﬁcient palliative care team and especially for end-of-life care. It offers the parents reassurance and support during and after death. Homecare is an extension of LauraLynn house and is offered to families when and where possible. In addition, there is a 24 h telephone service whereby families can speak to a friendly voice in times of difﬁculties and when reassurance is needed. LauraLynn House offers a much needed service for children and families with life-threatening illnesses. LauraLynn House is a lifeline to those in need of palliative care and while it is based in the Dublin metropolitan area, it is hoped that LauraLynn’s model of care will be replicated elsewhere in Ireland. Source: http://www.sunshinehome.ie/lauralynn-house.html

Case Study: The Jack and Jill Foundation The Jack & Jill Children’s Foundation was set up by Jonathan Irwin and his wife Mary Anne O Brien in 1997 to provide home based respite to children under the age of four with severe to profound developmental delay, by giving a donation to families to engage a nurse or career in the home. The Irwin family set up ‘Jack & Jill’ based on their own personal experience with their son Jack who they cared for at home for 18 months until he passed away in December 1997. Since then, the Jack & Jill Children’s Foundation has supported over 1,300 children and their families in Ireland by raising over C30 million privately and receiving C4 million from the Irish State to provide this vital service to children in their homes in every community in Ireland. The following case study was contributed to the chapter by Sinead Moran, Liaison Nurse with the Jack and Jill Children’s Foundation. The case study – the story 248 C. Cunningham and P.J. Larkin

of Mary, demonstrates the invaluable work the Foundation undertakes with families of children born with life-threatening conditions.

The Story of Mary Mary was referred by the discharge nurse at 10 days old from the National Maternity Hospital to the Jack and Jill Children’s Foundation. Mary, had a diagnosis of Pataus Syndrome associated with a cleft lip and palate. Mary’s parents were told that she required palliative care and they decided they would like to take Mary home to care for her for whatever time she would live. When a referral came to the Jack and Jill Children’s Foundation, the Liaison Nurse went to visit the family in the Maternity Hospital to plan for Mary’s discharge home. For the next 7 weeks and 2 days (51 days), the Jack and Jill Liaison Nurse organized, coordinated and liaised with other services for Mary’s nursing needs at home. This made the families’ experience of caring for Mary less difficult. Pediatric nurses from Jack and Jill provided nursing care 2 nights a week and 8 h a day respite care which helped alleviate the parent’s fears of being on their own at the time of Mary’s death. The support was even more important during that time as Mary suffered feeding problems, seizures and other difficulties. These were effectively managed through advice and consultation with the Palliative Care Nurse from the National Children’s Hospital – Our Lady’s Children’s Hospital, Crumlin, Dublin. Oromorph and midazalom was introduced for pain management and a pediatric nurse was available to Mary’s family 24 h a day for her final days. In addition, the Jack and Jill Liaison Nurse was also available 24 h a day should there be any issues for coordination and to provide home visits. During Mary’s final day of life, it was evident to those caring for her that she was uncomfortable. The Home Care Palliative Care Specialist for the area was consulted for guidance with her care and to ensure that she was comfortable. Following this consultation and guidance, Mary’s medication was adjusted and she died peacefully later that day in the comfort of her home and parents’ arms. Funding for the provision of the level of home nursing provided to Mary and her parents in her home was provided for by several organizations: the Jack and Jill Foundation; the Health Service Executive; Nurse for Daniel; the Irish Hospice Foundation; and the Voluntary Health Insurance. Funding was coordinated by the Jack and Jill Liaison Nurse. Mary’s story demonstrates the important work undertaken by the Jack and Jill Foundation for children with palliative care needs in Ireland. The Foundation provides a valuable service, meeting a gap in pediatric palliative 14 Pediatric Palliative Care in Ireland 249

care services for parents and families of babies born with life-threatening neurological illnesses. Jack & Jill recipient families refer to the service as ‘The gift of time – time to do the normal things that others take for granted like sleeping, shopping, working, reading a book, bringing the other children to the park while their sick child is being well cared for at home’ [12].

14.5 Conclusion

Although pediatric palliative care is a recent development, it has the beneﬁt of an agreed policy on the way forward for pediatric palliative care. This chapter critically appraised the policy and the particular challenges in terms of how its recommendations resonate with the larger policy dimensions of palliative care in Ireland. The new Pediatric Palliative Care Policy does not support the development of a children’s hospice in Ireland and prefers the ‘hospice-at-home’ services as the model of choice. However its success is dependent on linking in with existing childcare services within a local region. Despite the limited and contradictory evidence on children’s hospice, the development of a children’s hospice is taking place under the LauraLynn Foundation. As hospice care is not supported in the policy, there is little likelihood of other in-patient developments being approved despite it being evident that this initiative responds to an important need for respite care. The LauraLynn Foundation advocates that for some parents, home care is not always the most appropriate option and therefore hospice care is important for some children and families. Sadly, the lack of visibility for a hospice in the policy means that it is looking to charitable rather than statutory funding to develop and the current downturn in the Irish economy may have an impact on how well this progresses in the near future. Nonetheless, the new pediatric palliative care development advocates for integrated care pathways that provide a logical framework of care for a child and family from diagnosis through to end-of-life and bereavement care. With all the challenges that this new development for Ireland poses, directing care planning using this valuable and well-presented framework has the potential to strengthen and enhance the care of children with life-limiting illness for the decades to come.

References

1. Central Statistics Ofﬁce (2010) Population and migration estimates April 2010. CSO. http://www.cso.ie/releasespublications/documents/population/current/popmig.pdf. Accessed 20 Nov 2010 2. The All-Party Oireachtas Committee on the Constitution (2005) The constitution of Ireland. Government of Ireland. http://www.constitution.ie. Accessed 21 Jan 2010 250 C. Cunningham and P.J. Larkin

3. Health Service Executive (HSE) (2011) About Health Service Executive. HSE. http://www. hse.ie/eng/about/About.html. Accessed 02 Feb 2011 4. Department of Health and Children (2011) Fact sheets: medical cards. Government of Ireland, http://www.dohc.ie/. Accessed on 02 Feb 2011 5. Department of Health and Children (2009) Palliative care for children with life-limiting conditions in Ireland – a national policy. Stationary Ofﬁce, Dublin 6. Department of Health and Children (2001) Report of the National Advisory Committee on palliative care. Stationary Ofﬁce, Dublin 7. Quin S, Clarke J, Murphy-Lawless J (2005) Report on a research study of the palliative care needs of children in Ireland. Department of Health and Children, Irish Hospice Foundation & Faculty of Pediatrics, Royal College of Physicians in Ireland 8. Association for Children with Life-Threatening or Terminal Conditions and their Families (ACT), Royal College of Pediatrics and Child Health (RCPCH) (2003) A guide to the development of children’s palliative care services. Bristol, UK 9. World Health Organisation (1998) Cancer pain relief and palliative care in children. WHO, Geneva. ISBN-13 97892415451129 10. De Vlieger T, Gorschs N, Larkin P, Porchet F (2004) A curriculum for the development of palliative nurse education in Europe. European Association for Palliative Care. Milan, Italy 11. McKenna J (2010) Founder of Laura-Lynn House. Personal Communication. Accessed 15 Dec 2010 12. Moran S (2010) Liaison nurse The Jack and Jill Children’s Foundation. Personal Communication. Accessed 29 Dec 2010 Chapter 15 Pediatric Palliative Care in Poland

Marek W. Karwacki

Abstract Alone among the countries of Central and Eastern Europe, a groundswell towards hospices began in Poland in 1972, while the country was still under communism domination. Societal movement of “Solidarity”, strongly supported by the Polish Catholic Church and particularly His Holiness Pope John Paul II, the greatest among Poles, brought not only freedom to the country and democracy in 1989, but also liberated the positive potential of society. As a result, the first professional home care team, Hospitium Pallotinum, started in Gdansk in 1984, due to the impact of the Catholic Church. Since that time more than 160 hospices for adults have been established. Following the growth of adult hospices, the first specialist home care hospice for children in Poland, a beacon for Eastern and Central Europe, was founded by Dr. Tomasz Dangel in 1994. Warsaw Hospice for Children (WHC) is an exemplary home care program, which operates on standards based on British ACT principles. It has developed an education program in pediatric palliative care, and has supported the development of several similar teams or sections of pediatric palliative care in hospices for adults in Poland and some other European countries as well. Today, there are 36 hospices in Poland providing professional pediatric palliative care, covering almost 93% of the childhood population. In November 2007, a federation of Polish hospices providing professional care for children was established. This official body aimed at lobbying for the interests of pediatric palliative care among Polish decision makers, mostly politicians and officials from Parliament, the Ministry of Health and the National Health Fund. A precise description of the background of Polish pediatric palliative care, history of its development, achievements and targets for the future establish the core of this chapter.

Keywords Poland · Pediatric palliative care · History · Development · Organization · Future · Warsaw Hospice for children

Let us hurry to love people, they depart so quickly. - Father Jan Twardowski, a Polish poet

M.W. Karwacki (B) Department of Oncological Surgery for Children & Youth, Institute of Mother and Child, 01-211 Warsaw, Poland Home Hospice Program for Children (NGO), 05- 400 Otwock, Poland e-mail: [email protected]

C. Knapp et al. (eds.), Pediatric Palliative Care: Global Perspectives, 251 DOI 10.1007/978-94-007-2570-6_15, C Springer Science+Business Media B.V. 2012 252 M.W. Karwacki

15.1 Introducing Poland

The Republic of Poland is located in Central Europe. Today Poland is a democratic country with a stable, robust economy, and a member of NATO since 1999 and the European Union since 2004. Its capital and the largest city is Warsaw (over 1.7 million citizens). The population is over 38.5 million and the country occupies an area of 312,000 km2 [1]. Poland is the sixth most populous member of the European Union, and the most populous post-communist member. The population of Poland, based on figures from the 2002 census, is almost homogenous in regard to ethnic groups (Polish 96.7%), and religion (89.8% declared Catholic, but about 75% are practicing Catholics). Urban populations make up 61% of the total population, based on figures from 2008, and the percentage of the population below the poverty line was about 17% in 2003. Children (ages 0–14 years) comprised 15% of the general population in 2010. As of July 2010, actual birth and death rates were 10.04 and 10.1 per 1,000 persons, respectively. Internationally accepted indices for Poland, which best describe the health quality of the country, are as follows: infant mortality rate is 6.66 deaths/1,000 live births and life expectancy at birth is currently 75.85 years, with a median age of 38.2 years. Presently, the recorded number of deaths among children and adolescents aged 1–19, is slightly below 2,500, or 29 per 100,000 persons [2]. In spite of a falling trend, mortality among children and young people in Poland continues to be higher than that observed in most of the European Union (Poland ranks 19th out of 27) [2]. During the years 1990 to 2007 the strongest decrease was noted with respect to the mortality of children aged 1–4, which is less dependent on external factors comprising the leading cause of death in the childhood population in Poland. In older age groups the decreases detected in previous years came to a halt in 2000 [2]. It is assumed that in Poland almost 1,200 children a year die from a life- limiting disorder [3]. According to the EUROCAT Website Database, the estimated prevalence of congenital anomalies in Poland, registered between 1999 and 2008, was 26.91 per 1,000 births [4]. Perinatal mortality caused by congenital anomalies accounts for 1.48 per 1,000 births [4]. Childhood malignancy, with a prevalence of 134.1 per 1 million children aged 0–19 [5], ranked second as a cause of death behind unintentional injuries in Poland [6]. In 2003, almost 4 boys and 3 girls per million of the childhood population (0–19 years) died from a malignancy, which constituted approximately 220 deaths a year [6]. Regardless of sex, the most frequent cancer types that cause of childhood death are brain tumors and acute lymphoblastic leukemia. The third most frequent cause of death is primary malignant bone tumors in boys and acute non-lymphoblastic leukemia in girls. These four types of malignancies account for more than 45% of childhood deaths caused by cancer [6], whereas the framework of incidence of particular malignancies resembles those known worldwide, with a dominance of leukemia, brain tumors and Non-Hodgkin’s Lymphoma. Religiosity and history have had the greatest influence in the development of Polish nationality. Poland is an ancient nation, where the beginnings of the Polish State date back to the middle of the 10th century. Its golden age occurred in the 15 Pediatric Palliative Care in Poland 253

16th century and by the end of 18th century three monarchies (Russia, Prussia, and Austria) had partitioned Poland amongst themselves. The country regained its independence in 1918 only to be overrun by Germany and the Soviet Union during World War II (1939–1945). Poland became a Soviet satellite state following World War II, but its government was comparatively tolerant and progressive. Labor turmoil in 1980 led to the formation of the independent trade union Solidarity that over time became a political force which eroded the dominance of the Communist Party. By 1989, after the period of martial law and several years of political repres- sion, Solidarity had triumphed in Poland’s first free and democratic parliamentary elections since the end of World War II and subsequently, the first presidency. The Solidarity movement heralded the collapse of communism across Eastern Europe. As a result of non-violence, successful political and economic transition, Poland joined NATO in 1999 and the European Union in 2004. Centuries of underground resistance and conspiracy resulted not only in several rebellions in the 18th and 19th centuries, two worldwide famous uprisings, Kosciuszko Uprising in 1794 and Warsaw Uprising in 1944, and eventually, Poland regained its independence after World War I as the Second Polish Republic and after post-solidarity transition, as the Third Polish Republic, in 1989. Long lasting resistance and conspiracy had the greatest influence on the so called “national character” of Poles, who in general are independent and open minded revolutionists. Pro Patria (fatherland), God and honor – these have been the motto of many gen- erations of Poles who have fought for independence, not only for themselves, but also for other friendly nations. One well recognized patriot who fought not only for Poland, but for other countries freedom, was Tadeusz Kosciuszko, a national hero in Poland, Lithuania, Belarus, and the United States. Kazimierz Pulaski, another internationally recognized hero saved the life of George Washington during the American Revolutionary War and has been called the father of American cavalry [7]. And finally, Lech Walensa, an electrician, co-founder and leader of the Solidarity trade union from early on, awarded the Nobel Peace Prize in 1983, was the first democratically elected president of Poland after the First Free Elections in 1990.

15.2 Development of the Hospice Movement in Poland: Building the Ground for Pediatric Palliative Care

Pediatric palliative care in Poland would have never evolved without perennial support from the existing hospice movement in adult medicine. However, the ability of the hospice initiative strongly depended on the political situation in Poland. Before 1980, all activities not controlled by the communist party and government were prosecuted. In spite of this, some limited hospice developments did take place before the end of communism era, beginning in 1972. In general, progress occurred from early 1980s alongside the growth of the Solidarity movement and was strongly supported by the Polish Catholic Church. This explains why even today most of the hospice organizations belong to, or are closely connected with the church. The 254 M.W. Karwacki

Roman Catholic Church, under the leadership of His Holiness Pope John Paul II, the greatest among Poles, played a crucial role as the protector of civil society during periods of communism and right wing authoritarian rule, as well as taking an active role to promote the establishment of democracy, and was greatly responsible for success of Solidarity. Solidarity, a broad anti-Soviet social movement ranging from people associated with the Catholic church to members of the anti-Soviet left, advocated non-violence for its members. At that time, most of non first line Solidarity members attributed focused on social support to families persecuted by official institutions. Their engagement suddenly spread to other families in need, especially families caring for terminally ill persons. From the very beginning, hospice care based on volunteers gathered at Roman Catholic parishes and several priests first organized informal home palliative care programs. Alone among the countries of Central and Eastern Europe, a groundswell towards hospices began in Poland in 1972, when church members in Nowa Huta, a district of Cracow, began to visit the dying in the local hospital [8]. In 1981 they appointed a local society and in 1982 they started a home care program gathering volunteers trained to help dying patients in their everyday activities. In 1998 a stationary hospice was finally built. One of the most distinguished events that strongly supporting the beginnings and subsequent organization of palliative care in Poland was a visit from Dame Cicely Saunders, an English nurse, physician and writer, who first developed the idea of physical and emotional support for dying patients. In 1967, Dr. Saunders opened and became the medical director of St. Christopher’s inpatient hospice in London. St. Christopher’s was based on the hospice model of Calvary Hospital in New York City. She had been engaged to a Polish professor of art, who died from cancer in her hospice, and she was also influenced by memories of two other Poles, she previously fell in love with, who also died from cancer. These facts deeply affected her private and professional life, and she decided to visit Gdansk, Warsaw and Cracow in 1978 [8]. There she gave some lectures and great encouragement to existing organizations, stimulating much enthusiasm which was met with further activities. One of the most distinguished Poles she met was Dr. Jacek Luczak, who forged international links with the palliative care community through his meetings with Dr. Saunders and with further contacts, such as Dr. Jan Stjernsward of the World Health Organization, Prof. Vittorio Ventafridda from Italy, and especially, Prof. Robert Twycross from Oxford, who has given him considerable clinical support for years, as well as to Polish and East European initiatives in palliative care [9]. In 1984, the impact of the Catholic church resulted in the development of the first professional home care team, Hospitium Pallotinum, established in Gdansk by Eugeniusz Dutkiewicz, a Catholic priest. This became the seminal program, growing with time and spreading care to children and patients with non-oncological diseases. This hospice helped to organize more than 20 similar groups throughout Poland, usually Catholic agencies which offered home care programs. Based on the Gdansk model, the hospice of St. Jan Kanty was established in Poznan in 1985. This voluntary home care service was originally staffed by physicians, nurses, medical students and lay people. The second hospice in Poznan, but the 15 Pediatric Palliative Care in Poland 255

first palliative care unit in Poland officially financed by the government’s Ministry of Health, was established in 1987. This hospice began as a pain clinic, and gradually developed the functions of home care, volunteer support, education and research, day care, bereavement follow-up, a lymphoedema clinic, and inpatient care. The Department of Palliative Care belonging to the Department of Oncology at the Karol Marcinkowski University of Medical Sciences in Poznan implemented the first educational palliative care program for students and postgraduate program for physicians in 1991 [8]. From the beginning it was administered by Prof. Jacek Luczak, the founder and the first President of National Council for Hospice and Specialist Palliative Care service of Polish Ministry of Health. In 2001, the Department became an independent part of the Medical University and extended its activities to non-oncological patients. Palliative care, both stationary and home care programs, came into being in all larger cities in Poland in the 1990s. Palliative care societies, initially informal, then registered officially, gathered in 1991 and founded the National Forum of the Hospice Movement. This Forum actually transformed into the association of societies called Forum of the Polish Hospices [10]. Primary activities are related to the integration and promotion of the hospice movement throughout Poland and abroad. Forum cooperates with other similar institutions, such as Help the Hospice Foundation in the United Kingdom or National Hospice and Palliative Care Organization in the United States. After transition, the country quickly and effectively improved its normative base and practice of organization in the public health system according to European and international standards. It took Poland until the beginning of 1997, more than 6 years after the fall of communism, to legislate the National Health Insurance Law, with implementation still several years away. Current rules of general health insurance are provided in the revised Law of 23 January 2003 on the General Insurance in the National Health Fund (NHF). Nevertheless, Poland’s current health care system is based on a general, obligatory,1 all inclusive insurance system guaranteed by the constitution. State subsidized health care is available to all Polish citizens who are covered by this general health insurance program. Apart from state run hospitals, private sector hospitals do exist, and they can also apply for NHF reimbursement. The main cornerstone in development of the present system came in 1991 when the Sejm, or lower chamber of the Polish Parliament, passed the law Health Care Institutions, enabling various societies and associations to establish professional health care programs. The Social Insurance Act of 1997 and Amendment to the Health Insurance Act in 1998 also provided an opportunity to get financial assistance for hospice care from the government. In 1991, the Polish Chamber of Physicians and Dentists, funded in 1922, dissolved in 1952 and reactivated in 1989, established a Code of Medical Ethics, which was amended in 1993 and in 2003. It constitutes the greatest ethical imperatives for physicians, with a description of a doctor’s

1 The insurance is paid by all employees with exception of farmers and some other professions, paid by state 256 M.W. Karwacki responsibility and obligations when faced with treating a patient with a terminal illness in particular. As a result of the growing recognition by the Ministry of Health and medical service payers, in 1991 a Palliative Care Program was added to the Ministry’s new policy, which resulted in the calling for national consultants in palliative medicine in 1994 and regional consultants from 1999, thereby establishing the Polish Standards of Palliative Care in 1999. Besides the tremendous effort from the leaders of pediatric palliative care, the standards never separated adult from pediatric palliative care until recently. Curricula for medical postgraduate training created in 1991 resulted in further development of adult palliative care departments and sections within various Polish medical universities. In 1994, the Ministry of Health and Social Welfare endorsed a booklet which contained information concerning cancer pain control, designed to improve the practice of pain control and to induce the correct use of opioids in particular, fighting the myths and fears associated with this class of medications. One of the coauthors of the booklet was Dr. Tomasz Dangel [11]. Since 1999, medical specialization in palliative care has been available in official postgraduate education for both physicians and nurses. Strong and continuing support since 1991 from George Soros Foundation of the Open Society Institute, New York (OSI-NY) and Polish Hospices Fund, on the patronage of the Polish Ministry of Health educational activities evolved in Poznan’s Hospice Palium where the Resource and Training Centre linking palliative care professionals from Eastern Europe was established, resulted in the foundation of the Eastern and Central Europe Palliative Care Task Force (ECEPT). The ECEPT produced an important document to palliative care entitled, The Corner-Stone Poznan Declaration 1998 [12]. Currently in Poland there are hospices still functioning on a voluntary basis (although the number of such hospices is progressively decreasing), hospices based partially on voluntary, paid employees, and non-governmental organizations (NGOs) as well as public institutions, which fully professional activities are based on full time employment and hospices that are partly financed by the NHF. Today, about 130 non-profit societies and hospice foundations, both secular and religious, exist in Poland. Since the 1990s more than 160 stationary hospices and home care programs for adult patients requiring palliative care have been founded.

15.3 Development of Pediatric Palliative Care Programs in Poland

Poland is an example of the successful implementation of palliative care for adult, and the successful enactment of legislature necessary to provide these services. The situation of pediatric palliative care in Poland is slightly different. From the very beginning teenagers, and occasionally children, suffering from malignancy were only sporadically admitted to the existing palliative care programs for adults. Until the end of 1990s, childhood diseases, especially cancer, were treated aggressively 15 Pediatric Palliative Care in Poland 257 exploiting non proportional measures even when faced with death, with the overall goal of extending the life of the child as much as possible, regardless of prognosis, prior and forthcoming costs of therapy, legitimacy, advanced stage of disease and even, the suffering of the child. This has been a general rule rather than an exception, whereby pediatricians in Poland hardly accepted withholding and withdrawing of active treatment, even if not existing (e.g., neurodegenerative diseases) and very often forced extraordinary or disproportionate means of sustaining the child’s life. Growing interests towards, and an appreciation of, palliative care for adult cancer patients spread with time from adult to pediatric oncology. Some physicians trained in palliative as well as pain medicine started to offer this kind of care to children dying from cancer. Among many pioneers of pediatric palliative care working within the structures of adult hospices, Prof. Luczak’s Department of Palliative Care of UMS in Poznan established the first stationery program which admitted teenagers and schoolage children. Dr. Jolanta Grabowska-Markowska, a pediatrician who in 1990 managed the home, and in 1994 managed a stationary hospice for adults in Myslowice, began a home and stationary care program for children in 1998 [13]. Dr. Zbigniew Bohdan, pediatric hematologist/oncologist from the Hospitium Pallottinum in Gdansk, started a home care program for children in the mid 1990s and established a stationary care program for children in 2003. Since the late 1990s, many hospices in Poland have allowed admission of older children, but only a few have separate programs for children suffering from illnesses other than malignancy. According to the newest report concerning pediatric palliative care in Poland [14], among more than 160 adult hospices currently only seven have separate, comprehensive pediatric palliative care programs, and another 10 propose expert consultation and home or stationary care for children with illnesses other than malignancy. Since 1994, when the first exclusive home pediatric palliative care program was established in Warsaw, a total of 15 standalone programs have been established, offering mostly home, but also some stationary care for patients aged 0–34 (the oldest age of patient treated in Polish hospices for children), suffering from malignancy and non-oncological diseases [13, 14]. The founder of a first specialist home care hospice for children in Poland, a beacon for Eastern and Central Europe [15], was Dr. Tomasz Dangel, pediatric anesthesiologist who was hired by the Institute of Mother and Child (IMCh), Warsaw in the early 1990s to launch a pain clinic. With strong support from the Director of IMCh, and keeping the position of senior lecturer in the Department of Anesthesiology, Dr. Dangel prepared the foundation for a home care program for children dying from cancer. This unique program, called Warsaw Hospice for Children (WHC), started in 1994. Based on his personal and professional disap- pointments during previous work in an intensive care unit of the greatest, highly specialized, multidisciplinary pediatric center in Poland (The Children’s Memorial Health Institute, Warsaw), Dr. Dangel decided to create the WHC. At WHC terminally ill children and their families would receive treatment adequate to the clinical stage of intractable disease, but not extraordinary or disproportionate therapy, which prolonged life without dignity, and aggravated the suffering of dying children and 258 M.W. Karwacki their parents. He was deeply inspired by work of Dr. Sanders, but especially her suc- cessors in the field of pediatrics, Prof. David Baum2 and Dr Ann Goldman [16, 17]. Professor David Baum, late professor of Child Health as well as the President of the Royal College of Pediatrics and Child Health and a leading light in the development of children’s hospice and respite care in the United Kingdom, together with Sister Frances Dominica,3 were the co-founders of the Association for Children with Life-Threatening or Terminal Conditions and Their Families (ACT). ACT started in 1988 and was the first organization in the world, and the only one in the United Kingdom, concentrated on children with life-threatening or terminal conditions and their families. ACT publicly launched the Charter for Children with Life-Threatening Conditions and Their Families in June 1993 [18]. This document instituted the grounds for and principles of modern pediatric palliative care. Dr. Dangel, devoted Catholic and purposeful personality with a strong interest in science, began WHC in mid 1994 with three young nurses and one social worker. This small team formed the background for pediatric palliative care in Poland, not only locally, but they also aroused both professional (meaning among adult pal- liativists, pediatric oncologists and pediatricians in general) and public awareness. He formed the rules of pediatric palliative care based on the 1989 United Nations Convention on the Rights of the Child [19], the European Charter of Children’s Rights [20] from October 1993, the 1993 ACT Charter, the Polish Code of Medical Ethics amended in 1993 and some Catholic documents of utmost importance. These Catholic documents included His Holiness Pope Paul’s VI 1968 encyclica Humanae Vitae [21] and His Holiness Pope John Paul’s II 1995 encyclica Evangelium Vitae [22], other His Holiness Pope’s letters concerning death, dying, dignity and euthanasia, as well as Charter for Health Care Workers [23] issued by the Pontifical Council for Health Pastoral Care in 1995. His Holiness Pope John Paul’s II statement from 1995 encyclical Evangelium Vitae states, In such situations, when death is clearly imminent an inevitable, one can in conscience refuse forms of treatment that would only secure a precarious and burdensome prolongation of life, so long as the normal care due to the sick person in similar cases is not interrupted...determined the basis of the professional activities of the WHC [24]. Since September 1, 1994, when the first patient was admitted, the team of WHC has grown continuously. By 1999 there were 19 employees, including three qualified doctors and six nurses, and more than 40 volunteers, who cared for 51 families. During the early years, WHC was financed mostly by the NHS budget which was

2 “Professor David Baum, was passionate in his work to improve the lives of children. He worked with tremendous energy and enthusiasm for the creation of the Royal College of Pediatrics and Child Health and became president shortly after its foundation. He was a remarkable pediatrician who brought humour and love of life to everything he did. He believed in making a difference to the world. David Baum died suddenly on the 5th September 1999 whilst taking part in a sponsored bicycle ride to raise money for child health services in Kosovo and Gaza”. (from memorial inscription of “The David Baum International Foundation”) 3 Sister Frances Dominica was a founder of Helen House Hospice for Children, the world’s first children’s hospice, opened in November 1982 15 Pediatric Palliative Care in Poland 259 centrally managed by the Ministry of Health through the national research Institute of Mother and Child, Department of Palliative Care. Later, in 1995, the WHC, which was named after A. Lewinski and A. Mazur, the first benefactors, was registered officially in court as a branch of the Polish Palliative Care Society. This allowed for co-financing the activities of the WHC by public and private donations. Due to the changing rules of financing the health system in Poland and transition from a centrally managed governmental into a separate and independent system of obligatory regional Health Insurance Organization Systems, the necessity to spread the everyday care from scientific and educational activities emerged in 1999. Therefore, all medical and social competences started to be financed by the WHC Society, and education was left to Institute of Mother and Child and because of a deficient budget, it was financed partly by governmental funds and partly by WHC [3]. The next revolution in funding took place in 2002 and entailed the occasion to change the legal status of WHC, which shifted from a society branch to an independent foundation. In mid 2000 WHC became a totally independent institution, not chained to any scientific body. This means that currently the WHC Foundation offers either active professional care or education in the pediatric palliative care field on its own principles with no control from the official bodies. The WHC Foundation also operates a non-profit dental clinic for mentally disabled children who require special care and a prenatal ultrasound clinic for early diagnosis of defects in unborn children. Overall, this unique program designed by a pioneer in home pediatric palliative care with long term experience as well as having a scientific background, resulted in the Polish Standards in Pediatric Palliative Care which should serve as a guideline for forthcoming hospices for children in Poland [25, 26]. In spite of the tremendous effort of WHC staff, along with support from lawyers and officials, these standards have never been implemented in practice by Ministry of Health. Thanks to Dr. Dangel’s merit, WHC currently provides free professional medical home care for incurably ill children, when parents and doctors decide to withhold curative treatment in the hospital, offers comprehensive support in the terminal stage of the child’s life and afterwards during the bereavement and cares for the whole family [27]. Lately, WHC has introduced a prenatal palliative care program for families expecting that their child will suffer from a profound disorder diagnosed prenatally. The distinguishing novum concerning the WHC program was the permanent evaluation of quality of care and parental satisfaction, as reported by bereaved parents a few months after their child’s death, as well as their problems and fears concerning decision making and admission to hospice [28, 29]. WHC has also been evaluated by external experts in pediatric palliative care [30–32]. Educational grants received mainly from OSI-NY and the introduction of the teaching team trained in pediatric palliative care lead to the development of the European Resource and Training Center mainly serving Eastern and Central European countries. Since 1998, WHC has invited medical personnel from around the world free of charge to a training session on palliative home care for dying, as well as severely disabled children. Even today, doctors and nurses already working at or planning to open a palliative care institution are welcome to receive this free 260 M.W. Karwacki training. For example, Dr. Dangel had a personal contribution in the development of pediatric palliative care in Belarus. The Belarusian Children’s Hospice (BCH), founded in 1994 in Minsk by the child psychologist, Dr Anna Gorchakova, received purposeful support from OSI-NY, and benefited from close links with WHC. The expertise of Dr. Dangel, who became the OSI-NY supervisor, and remarkable support, particularly in relation to the education and training of BHC staff, influenced the beginnings of the BCH [33]. Since the late 1990s, WHC has been a highly specialized institution offering training in pediatric palliative care which is conducted in Polish, English or Russian. The unique professional experience in symptom control dedicated to dying patients as well as expertise knowledge coming from everyday practice, resulted in an invitation to several on the WHC teaching team to participate in the first edition of the Oxford Textbook of Pediatric Palliative Care [34]. Between 1991 and 2002, Dr. Dangel and the scientifically oriented staff of WHC were invited to annual International Basic and Advanced Palliative Medicine Courses held in Poznan to spread the idea of pediatric palliative care among adult palliativist [35] from Poland and other European Countries. Starting from 1995, they presented information on pain and symptom control dedicated to children with cancer [35], and in 2000 expanded this to include the care of pediatric patients with non-oncological disorders [36]. The first national course designed exclusively for pediatric palliative care took place in Poland in spring of 1996 and was targeted mainly at pediatric oncologists, as were the next three courses. The purpose of the first three courses was to introduce pain and symptom control methods as well as the general idea of pediatric palliative care into the society of Polish pediatric oncologists and hematologists. During these courses they had to face the ethical and practical principles of treatment withholding and withdrawing practices, often for the first time in their professional life. The fourth course saw a formula change, whereby WHC offered multipurpose advanced courses for trainees recruited from the staff of existing hospices only. The multispecialty program comprised for the first time, symptom control issues of care for children with non-malignant diseases [37]. In 2010 WHC organized the 16th national conference in pediatric palliative care, which this time separated medical doctors from nurses. It is postulated that the 2010 course for nurses, finalized by official exam in pediatric palliative care nursing, will be the first obligatory course for nurses engaged in pediatric palliative care, required in their official professional specialty training. International activities of Dr. Dangel and the WHC teaching team resulted in a European initiative to institute the international forum of pediatric palliative care which would meet every 2 years in different countries. The purpose of this forum was to exchange experience and knowledge concerning pediatric palliative care between countries with established pediatric palliative care programs and encourage countries where children had no access to pediatric palliative care. The concurrent goal is to monitor the development of pediatric palliative care in Europe as well as to give concrete solutions on how to promote the idea of pediatric palliative care among inhabitants and governments. The fist European Course on Palliative Care for Children took place in Budapest, in 1999. The second and third were organized in Warsaw, in 2001 and 2003. Distinguished pioneers from the United Kingdom 15 Pediatric Palliative Care in Poland 261 and leaders of pediatric palliative care from other European countries participated in these courses, amongst whom were the Founder of ACT, Prof. David Baum (he participated in the first course, just before his tragic death); Prof. Ann Goldman, one of the most recognized pioneers of pediatric palliative care in the world; Prof. Susan Fowler-Kerry, who developed a successful research program in the area of pediatric pain and palliative care in Canada and who has been involved in several projects in the Middle East and Eastern Europe, supporting WHC from the very beginning; and Prof. Huda Huijer Abu-Saad, Director of Centre for Nursing Research, Faculty of Health Sciences, Maastricht University. Among the participants were doctors from almost all European countries, but especially from countries in transition to democracy, such as Albania, Moldova, the former Yugoslavia, and Ukraine. A distinguished achievement of all three courses was the introduction of the idea of pediatric palliative care to these countries. One result of these initiatives was a report describing the development of pediatric palliative care in Europe [38]. Besides WHC, the pediatric palliative care movement has been growing since 1997 when the second hospice for children was founded in Lublin. The quotation from David Clark, Professor of Medical Sociology, University of Sheffield, United Kingdom, perfectly matched the history of pediatric palliative care in Poland, Inspired by charismatic leadership, it was a movement that condemned the neglect of the dying in society; called for high quality pain and symptom management for all who needed it; sought to reconstruct death as a natural phenomenon, rather than a clinical failure; and marshaled practical and moral argument to oppose those in favor of euthanasia [39]. The first inspired person and one of the very first trainees of the WHC’s courses, these days a chaplain of the Department of Pediatric Hematology/Oncology, Medical University in Lublin, Father Filip Buczynski´ who holds a Ph.D. in psychology, founded the second hospice in Poland exclusively dedicated to children dying from incurable disorders. ‘The Little Prince’ Hospice for Children (LPHC) in Lublin was founded in 1997. Today it is still the only home hospice for children in Southeastern Poland. In 1999, the third children’s hospice, managed by Dr. Piotr Stengert, started in Lodz. From the very beginning activities of Lodz Hospice for Children (LHC) differed from others, mainly in terms of patients’ qualifications for care. LHC started the first program in Poland where artificial respiratory care is provided at home, supporting children on respirators dispatched from intensive care units. The next period of importance in the history of pediatric palliative care in Poland was the mid 2000s when a significant number of newly established pediatric palliative care projects appeared on the Polish Map of Hospices. According to the most recent report from 2010 [14] concerning the development and status of pediatric palliative care in Poland, in 2009 there were 36 hospices providing professional pediatric palliative care which covered almost 93% of the childhood population in Poland. Among them, 16 were founded as an exclusive children’s hospice, 10 constituted a branch of adult hospices and in 10 children received professional care from staff working for adult hospices. Some of them were founded only due to significant 262 M.W. Karwacki

financial support from WHC. The WHC is currently one of the leaders among NGO fundraising campaigners in Poland. Since 2006, WHC has collected yearly between 3 to almost 8 million Polish zlotys (equivalent of 750 thousand to 2 million euro). At the beginning of the 2000s, the Board of Directors of WHC decided to transfer a portion of money raised though the countrywide public campaigns to newly establish pediatric palliative care programs or to support volunteers who wished to start such a programs, mostly in regions of Poland which were not covered by existing hospices. In November 2007 on the formal meeting of representatives from most of the children’s hospices in Poland, the federation of Polish hospices offering professional care for children was proclaimed. According to registered statute, the federation is called Ogolnopolskie Forum Pediatrycznej Opieki Paliatywnej. From the beginning until today, the President of the Polish Forum of Pediatric Palliative Care is Father Filip Buczynski, the founder of the second hospice for children in Poland, The Little Prince’ Hospice for Children in Lublin. The main goal of the all-Polish Forum of Pediatric Palliative Care is to be the official body aimed at lobbying the interests of pediatric palliative care among Polish decision makers, who are mostly politicians and officials from Parliament, the Ministry of Health and the NHF.

15.4 The Polish Model of Pediatric Palliative Care

Basically, the preferred model of pediatric palliative care in Poland is home care which best meets the needs of the dying child. Stationary hospice care is exceptional. Concerning the concepts of pediatric palliative care, there are two ideas behind the activities of children’s hospices. A few established pediatric palliative care programs offer a modern, integrated model of palliative care, combining active treatment in specialized institutions or advised by them, with advanced holistic care and optimal symptom control provided by an experienced pediatric palliative care team at home. Examples are hospices who have admitted children with cancer that underwent chemotherapy as a palliative means, which still adequately controls the undesired symptoms of malignancy. Prognosis of a child at this “frozen” stage of malignancy is still open, and these patients are definitely not in the terminal phase but require more symptom control than a general practitioner has the experience to provide. The other example is artificial respiratory support provided to children with stable or progressive disorders (e.g., Phrenic Nerve Palsy or Spinal Muscular Atrophy type 1 (SMA-1)), whose treatment modality and required interventions surpass the knowledge and potentiality of general practitioners [40]. And last but not least, such an integrated model of pediatric palliative care is most suitable for children with advanced stage cystic fibrosis, who require interdisciplinary professional care well before the terminal stage, which demands specific knowledge, equipment and experience of caring staff. Children in this prolong pre-terminal stage usually receive basic support and advanced symptom control at home and are admitted to specialized clinics only 15 Pediatric Palliative Care in Poland 263 at crises (e.g., emphysema). The death of a child from cystic fibrosis is remote, but besides the disease’s multi-organ complications, they are separated from the external world and their peers, and usually stay abandoned at home with no perspective on life and fine fettle in particular. Very often, the personnel of a tutelary hospice are the only people whom the child can believe in and make personal friendships with. Usually the staff brings some laughter and hope, even when the child is fading to a home full of sadness and despair. That kind of suffering and multi-organ medical problems requires exceptionally advanced pediatric palliative care well before the terminal stage. Most definitely, the unique experience required for this kind of care is completely out of a general practitioner’s reach and even far beyond the horizon of highly specialized cystic fibrosis clinic personnel. Contrary to this integrated model, most of the hospices in Poland offer symptom control only at the terminal stage of disease conforming to previous palliative philosophy. This rule, dividing still active from palliative (terminal) care, is strongly supported by officials from Ministry of Health and NHF, yet is also promoted by Dr. Dangel’s WHC and hospices supported by him. The cardinal condition which must be fulfilled at admission to such hospices is a signed agreement that parents resign from active treatment and being aware of the disease course, they accept and consciously choose the end of life measures instead of treatments prolonging life for their children [41]. As usually happens in life, only exceptional pediatric palliative care programs rigorously comply with the rules for the two models. Often, even when formally declared under the institutional pressure of NHF, which is a payer, overseer and guidance entailing institution, most hospices warrant pediatric palliative care until the death of a child, often switching between active treatment and palliative care measures, even when continuous care lasts for many years [14]. Published data as well as my personal experience certify this. Findings from a 2009 report concerning pediatric palliative care in Poland show that among 944 children and adolescents treated in Polish hospices in 2009, only 153 died, which accounts for 16% and among the dying, only 64% (99) died at home [14]. Differences between particular hospices were astonishing. For example, the average proportion of death at home, which means that pediatric palliative care measures were implemented until the end of the child’s life, to the total number of treated children during a year ranged from 0to50%[14]. Moreover, 48 out of 214 (22%) patients dismissed from hospices regardless of the reason died somewhere other than home, which means that 78% received further active treatment of some kind [14]. Further, the length of treatment of particular patients was astonishing as well. According to the 2009 annual financial report of the WHC,4 the reference hospice for Poland which has implemented the most restrictive rules of patient admission, in one case care of a patient exceeded 12 years and in another eight cases care lasted 4 years. This accounts for almost 8% of patients treated in one given year of WHC’s activity (five out of 65 treated in 2009).

4 http://www.hospicjum.waw.pl/ 264 M.W. Karwacki

Nevertheless, the Polish model entails a large portion of care for incurable children at their homes to be provided jointly or separately with other services by NGOs, officially replacing the primary level of medical care. Such services are being provided by non-profit organizations, mostly private foundations. Obviously this enhances effectiveness and rational usage of funds coming from NHS reimbursement and local government and publicly raised money, which is the main source of most organizations’ budgets. Conversely, it sometimes creates problems with significant shortages of funds devoted to social support and rarely, even to medical care. Other problems arising occasionally are professional superintendency on some pediatric palliative care programs not always providing appropriate care. According to the last Decree of the Polish Ministry of Health concerning palliative care, issued on August 29, 2009, to establish a pediatric palliative care program that could apply for MHF reimbursement, the following minimum standards must be met. First, 24 h a day, 365 days a year availability of an interdisciplinary care team with sufficient expertise to address the physical, psychosocial, and emotional needs of the child and family (but not spiritual care, which seems strange in a devoted catholic country). Second, at a minimum, this team will include at least one pediatrician per 20 children admitted to a home program, visiting them on demand or at least twice a month; nurses specialized in palliative care in general or trained in pediatric palliative care (one nurse for 12 children, visiting then at least twice a week); social worker; psychologist (1/2 of the post for 12 patients); and, physiotherapist (1/2 of the post for 15 patients). According to the Ministry of Health, a guaranteed, and reimbursable by NHF, service can be offered to children until the end of 17th year of age, suffering from a life-limiting condition at terminal stage mentioned by name in a detailed list contained in the Decree, with an expected death within 90 days. The guaranteed service of home care must obey a professional medical con- sultancy and nursing care, free of charge pharmacological treatment and lending of necessary medical equipment for free, including highly sophisticated machinery if needed, at least in the minimum number and specification set by the Decree, social and psychological consultation or therapy (spiritual consultation is still not a service in the requirements), and, as a condition sine qua non, adequate pain and other symptoms control measures, according to the World Health Organization ladder and other internationally accepted recommendations. Among many things, the final list of particular diseases allowed by the Decree and the 90 day period aroused the most widespread criticism.

15.5 Current Problems and the Future of Pediatric Palliative Care in Poland

Palliative care programs need to be developed and widely available to provide intensive symptom management and promote the welfare of children living with life-threatening or terminal conditions. It is obvious that without financial and legislative support from the government authorities, Ministry of Health and NHF 15 Pediatric Palliative Care in Poland 265 as the national payer, the pediatric palliative care movement could have hardly grown. However, after the fall of communism health system reforms in Poland were less radical in comparison to other post-communistic countries. A change process started in the late 1990s, but the political fight for power heavily influenced the health system transition and resulted in two different reform concepts being implemented over a period of just a few years. Currently there are three main sources of health care financing: (1) the State Budget, provided on the supervision of the Ministry of Health which covers exclusively some of the most expensive, highly specialized procedures (2) Self-financing patient’s share, obviously not obligatory and not reimbursed by the national system, and (3) the NHF, providing reimbursement for a limited number of medical procedures and contracted yearly with health providers on a competitive basis, in which both private sector and state-owned entities can participate. Substantial imperfection of the reformed law, which led the Constitutional Court to rule the reform as unconstitutional, caused a destabilization of the whole health care system. Currently in Poland an insurance budgetary model of health care funding is in place, regulated mainly by the law on health benefits financed from public means. The income of NHF has been substantially limited over time, especially due to the world economic crisis of the late 2000s. Therefore, the most important obstacles limiting the further development of pediatric palliative care in Poland are (1) year to year more limited financial recourses gained from the NHF, as well as from other official and private donations; (2) out- standing limitations in the law concerning pediatric palliative care; (2) limited public awareness of the idea of palliative care in general, with existing myths and personal fears; (3) disinterest in the development of modern pediatric palliative care and implementation of integrative palliative care into every day practices observed among pediatricians; and, (4) lack of personal resources and training in pediatric palliative care. Without exception, exclusively children’s hospices are funded by NGOs, non- profit organizations, whose budgets are limited mostly by fundraising from public donations. As the number of different NGOs searching for substantial financial support is growing exponentially each year in Poland, the willingness of potential donors and the availability of free public funds is limited in general, and more so by the economic crisis of the mid 2000s. Moreover, the NHF used to reimburse from 40 to 60% of medical spending only and the observed trend is to increase neither the quantum of reimbursement nor the number of patients covered by NHF. Certainly, some of the children’s hospices have significant financial problems. As social support is part of the statutory activities of children’s hospices and this expenditure has to be covered by the pediatric palliative care program’s budget only, support for the families in poverty decreases as well. As a result, the medical and social security of families admitted to such hospices is often substantially diminished. Changes in reimbursement and adequate regulations of pediatric palliative care services are necessary to improve access for children and families in need of these services. Among many others, the most important regulations should include (1) the provision of appropriate pediatric palliative care standards, created by medical authorities, not by Ministry of Health officials who are arguably not familiar 266 M.W. Karwacki with everyday practices, (2) broader eligibility criteria concerning the length of expected survival (3) an open, but not restricted, list of diseases allowing the receipt of pediatric palliative care, (4) implementation of spiritual support and bereavement care into the official pediatric palliative care standards allowing further coverage from the NHF budget, and (5) implementation of some aspects of pediatric palliative care into training programs obligatory for pre and post graduate education for doctors and nurses, particularly in professional training required for medical specialization in pediatrics, for both doctors and nurses. All general and subspecialty pediatricians, family physicians, pain specialists, and pediatric surgeons need to become familiar and comfortable with the provision of palliative care to children. Residency, fellowship training, and continuing education programs should include topics such as palliative medicine, communication skills, grief and loss, managing prognostic uncertainty, and decisions to forgo life- sustaining medical treatment, as well as spiritual dimensions of life and illness – this quotation from one of the most important documents, the American Academy of Pediatrics [42] statement concerning pediatric palliative care, implemented the basis for pediatric palliative care, is still compulsory for Polish officials responsible for educational and training programs in medicine. Until recently, only a few postgraduate training courses designed for pediatric subspecialty include pediatric palliative care topics. A commendable exception is the postgraduate training course entitled, “The Concise Training Course in Pediatric Oncology”, organized annually by Department of Oncological Surgery for Children and Youth, Institute of Mother and Child, Warsaw. This course is obligatory in the educational process of the specialization in pediatric surgery, during which the basics of pediatric palliative care modalities and ethics are discussed. The herald of forthcoming changes concerning pediatric palliative care awareness among Polish pediatricians is fact, and illustrated by the pediatric palliative care sessions included in the Country Congresses of Pediatrics and Country Congresses of Pediatric Hematology and Oncology held bi-yearly. Overcoming these and other impediments would influence further development of pediatric palliative care in Poland, among which only the most important have been discussed. The basis of hope for forthcoming profound changes, which would proclaim the growth of the pediatric palliative care movement in Poland, is an important activity of the all-Polish Forum of Pediatric Palliative Care. In 2008, Forum representatives provided the Polish Ministry of Health with a core public project of Decree that regulated the rules and requirements concerning pediatric palliative care activity, responsibilities, financial support from the NHF and obligatory teaching program for the staff of existing and future hospices, as well as for other medical sub-specializations, who benefit from the activities of pediatric palliative care. The Forum, the official body aiming to lobby the interests of pediatric palliative care among Polish decision makers, rose into power within the last few years and today is able to exert pressure on the Parliament and Ministry of Health. There is much hope that growing awareness and public acceptance of pediatric palliative care among society and medical professionals, with increased support from legislators and Polish officials as well as with public donations and extensive 15 Pediatric Palliative Care in Poland 267 support, pediatric palliative care services will become broadly available for the majority of children who require highly sophisticated holistic care during an advanced course of life-limiting disorders. Working in the best interest of child, providing appropriate, proportional measures of care at the child’s home, we all follow the universal principle of pediatric palliative care, which is to add life to the child’s years, not simply years to the child’s life, an excellent conjecture from the American Academy of Pediatrics [42].

References

1. Central Statistical Ofﬁce (2002–2010) Concise statistical yearbook of Poland, 2002, 2003, 2008, and 2010. Central Statistical Ofﬁce. Warsaw, Poland 2. Mazur J, Malinowska-Cieslik´ M (2010) Perspectives on future decline in child and adolescent mortality in Poland. Med Wieku Rozwoj 14(2):150–159 3. Dangel T (2002) Poland: the status of pediatric palliative care. J Pain Symptom Manage 24(2):222–224 4. Eurocat (2010) Prevalence tables. European surveillance of congenital anomalies. http://www. eurocat-network.eu/ACCESSPREVALENCEDATA/PrevalenceTables. Accessed 12 Jul 2010 5. Kowalczyk JR (2008) Epidemiology of childhood maligmancy. [In Polish] In: Chybicka A, Sawicz-Birkowska K (eds) Onkologia i hematologia dziecie˛ca, tom 1–2. PZWL, Warszawa, pp 3–7 6. Wojciechowska U, Didkowska J (2006) Malignant neoplasia in children in 2003. [In Polish] In: Dangel T (ed) Opieka paliatywna nad dziecmi,´ Tom 14. Warszawskie Hospicjum dla Dzieci, Warszawa, pp 75–88 7. Szymanski´ L (1994) Casimir Pulaski: a hero of the American revolution. Hippocrene Books, New York, NY 8. Luczak J (1993) Palliative/hospice care in Poland. Pall Med 7:67–75 9. Luczak, J (1997) Palliative care in Eastern Europe. In: Clark D (ed) New themes in palliative care. Open University Press, Buckingham 10. Forum Polish hospices (2011) About Us. http://forumhospicjum.pl/. Accessed 2011 11. Kujawska-Tenner J, Łuczak J, Okupny M, Dangel T (1994) Fighting cancer pain. [in Polish] Zwalczanie Bólu Nowotworowego. Ministerstwo Zdrowia 12. Eastern and Central Europe Palliative Care Task Force (1998) The corner-stone Poznan declaration 1998. ECEPT. http://www.oncology.am.poznan.pl/ecept/declaration.ph. Accessed 2011 13. Hospicjum Cordis (2011) About Cordis Hospicy. Hospicjum Cordis. http://www. hospicjumcordis.pl/pl/cordis/about-hospicy-cordis/. Accessed 2011 14. Dangel T (2009) Pediatryczna domowa opieka paliatywna w Polsce 2009. Raport X. Fundacja Warszawskie Hospicjum dla Dzieci, Warszawa 15. Luczak J (2004) Genesis of Warsaw Hospice for Children on the background of hospice movement in Poland and Europe. [In Polish] In: Dangel T (ed) Opieka paliatywna nad dziecmi,´ Tom XII. Warszawskie Hospicjum dla Dzieci, Warszawa, pp 8–16 16. Goldman A, Beardsmore S, Hunt J (1990) Palliative care for children with cancer – home, hospital or hospice. Arch of Dis Child 65:641–643 17. Goldman A (1994) Care of the dying child. Oxford University Press, Oxford (and Reprint with revisions, from 1998) 18. Association for Children’s Palliative Care (2011) About ACT. ACT. http://www.act.org.uk/. Accessed 2011 19. United Nations (1989) Convention on the Rights of the child. United Nations Publications 20. Alderson P (1993) European charter of children’s rights. Bull Med Ethics 92:13–15 268 M.W. Karwacki

21. Pope Paul VI (1968) Humanae vitae: human life. Vatican City Press, Rome, Italy 22. Pope John Paul II (1995) Evangelium vitae: the gospel of life. Vatican City Press, Rome, Italy 23. Pontifical Council for Health Pastoral Care (1995) Charter for Health Care Workers. Vatican City Press, Rome, Italy 24. Dangel T (1998) Ethics: paediatric palliative care – personal perspective. Eur J Pall Care 5(3):89–91 25. Dangel T, Januszaniec A, Karwacki MW (1999) Standardy domowej opieki paliatywnej nad dziecmi.´ Nowa Medycyna 6(wydanie specjalne):43–50 26. Dangel T, Januszaniec A, Karwacki MW (2000) Standardy domowej opieki paliatywnej nad dziecmi,´ Standardy Medyczne 2(1):38–45 27. Dangel T (2001) Domowa opieka paliatywna nad dziecmi´ w Polsce. Wydawnictwo Naukowe Scholar. Warszawa.[publication finishing the process of habilitation – 2nd and the last degree of scientific carrier in Poland] 28. Dangel T, Fowler-Kerry S, Karwacki M, Bereda J (1999) Evaluation of a children’s community hospice program: development of a tool. Book of abstracts of the 9th World Congress on Pain, Vienna 22–27.08 Austria 29. Dangel T, Fowler-Kerry S, Karwacki M, Bereda J (2000) An evaluation of a home palliative care program for children. Amb Child Health 6:101–111 30. Hare A (1999) Palliative care for children in Poland. Eur J Pall Care 6(4):120–123 31. Wright M, Clark D (2003) The Development of paediatric palliative care in Warsaw, Poland. Eur J Pall Care 10(3):137–139 32. Friedrichsdorf S, Brun S, Zernikow B, Dangel T (2006) Palliative care in Poland – Warsaw Hospice for children. In: Dangel T (ed) Opieka paliatywna nad dziecmi.´ Tom XIV. Warszawskie Hospicjum dla Dzieci, Warszawa, pp 37–40 33. Dangel T (1999) The Belarus children’s hospice. Eur J Pall Care 6(1):28–30 34. Karwacki MW (2006) Gastrointestinal symptoms. In: Goldmann A, Hain R, Liben S (eds) Oxford textbook of paediatric palliative care. Oxford University Press, Oxford, pp 342–373 35. Dangel T (1995) Home care for dying children. In: Luczak J (ed) Palliative care advanced course for doctors. Puszczykowo-Poznan, May, 22–26 1995, Klinika Medycyny Paliatywnej AM, Poznan, pp 42–48 36. Karwacki M (2000) Symptom control in children with neurodegenerative disorders. In: Łuczak J (ed) Basic and advanced palliative medicine course. Polish Society of Palliative Care & Sir Michael Sobell House, Churchill Hospital, Oxford-Puszczykowo, pp 65–70 37. Karwacki M (1998) Palliative care for children dying from non-malignant, chronic and progressive course diseases [in Polish]. In: Dangel T (ed) Leczenie Bólu i Opieka Paliatywna u Dzieci. Tom IV, Instytut Matki i Dziecka & Warszawskie Hospicjum dla Dzieci, Warszawa, pp 12–27 38. Dangel T (2002) The status of pediatric palliative care in Europe. J Pain Symp Manage 24(2):160–165 39. Clark D (undated) Hospice in historical perspective. The encyclopedia of death and dying. http://www.deathreference.com/Ho-Ka/Hospice-in-Historical-Perspective.html. Accessed 2011 40. Karwacki MW (2003) Child’s autonomy and choice of treatment in terminal dyspnoea. Eur J Paediatr Neurol 7(2):A13 41. Karwacki MW (2001) Introduction of palliative care in children with non-malignant conditions: admission criteria. In: Dangel T (ed) Proceedings of 2nd European course on palliative care for children.Warsaw Hospice for Children, Warszawa, pp 15–19 42. American Academy of Pediatrics Committee on Bioethics and Committee on Hospital Care (2000) Statement: palliative care for children. Pediatrics 106:351–357 Chapter 16 Paediatric Palliative Care in the United Kingdom

Megumi Baba and Richard Hain

Abstract In the United Kingdom (UK), paediatric palliative care is defined by the Royal College of Paediatrics and Child Health (RCPCH) and the Association for Children with Life-Threatening or Terminal Conditions and Their Families (ACT) as “an active and total approach to the care of children and young people with life- limiting conditions, embracing physical, emotional, social and spiritual elements through to death and beyond.” In each of the four countries (England, Scotland, Wales and Northern Ireland), children’s palliative care is provided as part of Child Health Services through the National Health Service (NHS), which is free at the point of access, with contributions from voluntary sectors. It has been estimated that up to 1 in 500 children have life-limiting conditions and may benefit from palliative care at some point. Over the years different models of care have evolved around the local needs and availability of resources. Three tiers of expertise in paediatric palliative medicine (PPM) is an effective model. Training in PPM has developed significantly, particularly with its recognition as a subspecialty in paediatrics in 2009. How the children’s palliative care is provided in the UK is described together with some achievements that have been made so far and remaining challenges.

Keywords United Kingdom · Adolescent · Child · Child health services · Organisation · Palliative care · Terminal care · Epidemiology · Hospice · Training

16.1 The Country

The United Kingdom of Great Britain and Northern Ireland is a sovereign state made up of four constituent countries: England, Scotland, Northern Ireland and Wales. It is an island nation surrounded by Atlantic Ocean, the North Sea, the English Channel and the Irish Sea. The total area of the United Kingdom (UK) is approximately 243,610 square kilometres (94,060 sq miles), of which England accounts for just

M. Baba (B) Paediatric Palliative Medicine, Children’s Hospital for Wales, Cardiff and Vale University Health Board, University Hospital of Wales, Heath Park, Cardiff CF14 4XW, UK e-mail: [email protected]

C. Knapp et al. (eds.), Pediatric Palliative Care: Global Perspectives, 269 DOI 10.1007/978-94-007-2570-6_16, C Springer Science+Business Media B.V. 2012 270 M. Baba and R. Hain over half, Scotland just under a third and Wales and northern Ireland less than a tenth each. The UK has a temperate climate, with plentiful rainfall throughout the year. The population of the UK is approximately 62 million. The historical ties of British Empire and the current European Union (EU) membership make the population ethnically diverse and dynamic. There has been a substantial immigration from Africa, Caribbean and South Asia since the 1940s. Migration from new EU member states in Central and Eastern Europe since 2004 has added to the growth in migrant population. Ethnic diversity varies significantly across the UK. London and Leicester have high non-white populations of over 30%, whereas non-whites account for less than 5% of the total population in North East England, Wales and South West [1]. In 2007, 22% of primary and 17.7% of secondary pupils at state schools in England were from ethnic minority families [2]. The country is faced with increasing issues revolving around multiculturalism, immigration and national identity [3]. The UK is a constitutional monarchy. Queen Elizabeth II is the head of state of the UK as well as fifteen other independent Commonwealth countries. The UK has a parliamentary government with a Prime Minister as the head. The Prime Minister and Cabinet are formally appointed by the Monarch to form Her Majesty’s Government. There are two houses: an elected House of Commons and an appointed House of Lords, and any Bill passed requires Royal Assent to become law. There is a devolved parliament in Scotland and devolved assemblies in Northern Ireland, and Wales. The UK was the world’s first industrialised country and its economy remains one of the largest. The UK is a Member State of the European Union, the Commonwealth of Nations, G8, G20, Northern Atlantic Treaty Organisation (NATO), Organisation for Economic Co-operation and Development (OECD), the Council of Europe and the World Trade Organization. In the UK, Christianity is the largest religion, followed by Islam, Hinduism, Sikhism and then Judaism in terms of number of adherents. In the 2001 census, 9.1 million (15% of the UK population) claimed no religion and 4.3 million (7% of the UK population) did not state a religious preference [1]. The changing population characteristics in terms of ethnicity, culture and religion would no doubt influence paediatric palliative care in the UK, in the types of conditions we deal with and the way our services are developed and provided to meet the multidimensional needs of the children and their families. Population facts and figures are summarised in Table 16.1.

16.2 Health System

16.2.1 Overview of the NHS

The UK has a publicly-funded healthcare system, the National Health Service (NHS). The system was created in 1948. Although funded centrally from national taxation, NHS services in England, Northern Ireland, Scotland and Wales are 16 Paediatric Palliative Care in the United Kingdom 271

Table 16.1 Facts and ﬁgures [3] Full name: United Kingdom of Great Britain and Northern Ireland Population: 61.9 million Capital: London Area: 242,514 sq km (93,638 sq miles) Major language: English Major religion: Christianity Life expectancy: 78 years (men), 82 years (women) (UN) Monetary unit: 1 pound sterling = 100 pence Main exports: Manufactured goods, chemicals, foodstuffs GNI per capita: US $41,520 (World Bank, 2009)

managed separately. Private healthcare has continued parallel to the NHS, paid largely by private insurance. It is used by less than 10% of the population. The core principles of NHS upon which it was created were:

• That it meet the needs of everyone • That it be free at the point of delivery • That it be based on clinical need, not ability to pay.

With the exception of charges for some prescriptions and optical and dental services, the NHS remains free at the point of use for anyone who is resident in the UK. In 2000 new principles were added with a launch of a modernisation programme, which include provision of a comprehensive range of services that are shaped by and responsive to different needs of individual patients, their families and carers as well as local populations. Also included as goals were improving services, supporting staff, respecting conﬁdentiality and health promotion and illness prevention. NHS is the largest employer in the UK with more than 1.7 million employees, including 120,000 hospital doctors, 40,000 general practitioners (GPs), 400,000 nurses and 25,000 ambulance staff [4].

16.2.2 NHS Funding

NHS is funded from national taxation. The budget for the year 2008/2009 was over £100 billion. Sixty percent of the budget is used to pay staff, 20% pays for drugs and other supplies and the remaining 20% is split between buildings, equipment, training costs, catering and cleaning. Nearly 80% of the total budget is distributed by local trusts in line with the particular health priorities in their areas. The budget equates to a contribution of approximately £1,980 for every man, woman and child in the UK [4]. 272 M. Baba and R. Hain

16.2.3 NHS Structure

In England NHS is under the control of the Department of Health which is headed by the secretary of state for health. There are 10 Strategic Health Authorities (SHA), which oversee all NHS activities in their areas. Similarly the Scottish Government Health Directorate has 14 NHS boards and in Wales there are seven Local Health Boards. Northern Ireland has ﬁve Health and Social Care Trusts. NHS health care is divided into primary and secondary care. Primary care is the ﬁrst point of contact for most people and is delivered by a wide range of independent contractors, including general practitioners, dentists, pharmacists and optometrists. Primary care trusts (PCT) are in charge of primary care and have a major role around commissioning secondary care and providing community care services. They are central to the NHS and control 80% of the NHS budget. There are 151 PCTs in England. Secondary care is known as acute healthcare. There are 167 acute NHS trusts, which oversee 1,600 NHS hospitals and specialist care centres. There are also ambulance trusts, care trusts (social care) and mental health trusts [4]. The nature of our nationalised health system allows us to deliver the most appropriate services for patients at home or in hospital without worrying about different funding initiatives. This is particularly advantageous in the development of palliative care service that crosses the primary, secondary and tertiary care boundaries.

16.3 Children and Young People in Need of Palliative Care

16.3.1 Deﬁnitions

In the UK paediatric palliative care has been defined by the Royal College of Paediatrics and Child Health (RCPCH) and the Association for Children with Life-Threatening or Terminal Conditions and Their Families (ACT) as; an active and total approach to the care of children and young people with life-limiting conditions, embracing physical, emotional, social and spiritual elements through to death and beyond [5]. There is no single law that defines the age of a child across the UK but it is generally accepted that children are young people aged up to 18 years in line with the Children Act 1989 [6]. Specific age limits are set out in relevant laws, government guidance and policies. These age limits may differ between UK nations. For example, with regards to child protection, guidance England, Scotland, Wales and Northern Ireland all agree that a child is anyone who has not yet reached their 18th birthday, but for certain aspects of parental responsibilities the Children (Scotland) Act 1995 defines a child as a person under 16 years [7]. In practice children who are 16 years or older are generally cared for under the adult health services. In palliative care or any other specialties that deal with chronic conditions that are diagnosed in childhood, care is often extended beyond these age limits. Transition care for young people from 16 to 25 exists for some services. 16 Paediatric Palliative Care in the United Kingdom 273

16.3.2 Incidence and Prevalence of Life-Limiting Conditions

In the UK there are 14.8 million children under the age of 20 and it is estimated that around 6,500 die each year [8]. Previous studies have suggested that the estimated annual mortality from life-limiting conditions (LLC) is 1 per 10,000 and the prevalence of LLC is 10 per 10,000. However, data on the true incidence and prevalence of LLC among children remains hard to obtain. This is because of the universal challenge of defining the group of children who have life-limiting conditions, and then of determining the relationship between incidence and prevalence given the wide variability between disease trajectories. Using the ACT/RCPCH definitions as a starting point, a group of International Classification of Diseases (ICD-10) diagnoses has been identified that includes most LLC [9, 10]. Using this framework to analyse data in Wales, it appears that around half of all deaths occurring in childhood are caused by LLC [10]. The remainder is caused by conditions such as trauma and acute infection that, arguably, do not need palliative care services. Extrapolating to the UK as a whole, that equates to 3,250 new cases per year, or 2.2 per 10,000 population, and this is supported by evidence emerging from English studies [9, 11]. These figures are substantially higher than was historically thought [12]. They need to be confirmed in prospective and cohort studies currently underway. It should be remembered that this is the number of children who would potentially benefit from palliative care, not necessarily those who need it at any one time. It is hard to know how far these figures, even if proven, can be extrapolated beyond the UK. Work is being considered to extend these studies to other countries. What does seem to emerge from the UK data, however, is that the number of children who might potentially benefit from palliative care services is much higher than has previously been considered, even in the most generous estimates. Currently available national statistics on children with LLC are summarised in Table 16.2.

16.3.3 Types of Diagnosis

ACT defines a life-threatening condition as one in which medical intervention may prove successful but by its nature carries a substantial chance of mortality in childhood [12]. A life-limiting condition is defined as one for which there is no reasonable hope of cure and from which children will die [12]. The life-threatening and life-limiting conditions in children are diverse and numerous. ACT and RCPCH have developed four categories of these conditions according to the illness trajectories (Table 16.3), which can provide the basis for assessment of palliative care needs and appropriateness of the integrated care pathway for each patient [13]. The data on types of children’s LLC in the UK can be drawn from the Department of Health statistics [9] and existing databases of children’s hospices and specialist paediatric palliative care services. The Department of Health statistics identified 274 M. Baba and R. Hain

Table 16.2 Current statistics on children with LLC

In England [9]: • It is estimated that 5,800 children (aged 0–19) die each year • Of which 3,900 (67%) will have required palliative care including 2,100 (36%) neonates • Estimated annual number of children likely to require access to palliative care services is 23,500 (16 per 10,000 aged 0–19) • For neonates alone 1,473 are likely to require palliative care (1 per 10,000) • A further 10,400 young adults aged 20–39 in England, many of whom will have been diagnosed with a life-limiting condition in childhood, die per annum with life-limiting conditions and 40% of them are likely to have required palliative care In Scotland [40]: • It is estimated that 2,250 children have LLC • Half of these children will have substantial palliative care needs at some point (12.5 per 10,000) In Wales: • 226 children were identiﬁed to have palliative care needs (3.8 per 10,000) [27] • 569/1052 (54%) deaths among children in Wales were from LLC over the 5-year study period [10] In Northern Ireland: • Around 430 children have LLC • For every 50,000 children 5 are likely to die in a year from a progressive condition for which palliative care is appropriate, 50 are likely to have LLC, over half of whom will have substantial palliative care needs [41] • In the Western area 134 children under 18 have LLC, prevalence of 16 per 10,000 [34]

Table 16.3 ACT categories of life-limiting conditions [5, 12]

Categories Descriptions Examples

1 Life-threatening conditions for which curative cancer, irreversible organ treatment may be feasible but can fail. Access failures of heart, liver, to palliative care services may be necessary kidney when treatment fails or during an acute crisis, irrespective of the duration of that threat to life. 2 Conditions where premature death is inevitable, cystic fibrosis, Duchenne where there may be long periods of intensive muscular dystrophy, HIV treatment aimed at prolonging life and and AIDS allowing participation in normal activities 3 Progressive conditions without curative Batten disease, treatment options, where treatment is Mucopolysaccharidoses exclusively palliative and may commonly extend over many years 4 Irreversible but non-progressive conditions severe cerebral palsy, causing severe disability leading to multiple disabilities such susceptibility to health complications and as following brain or likelihood of premature death spinal cord injury 16 Paediatric Palliative Care in the United Kingdom 275 congenital malformations, deformations and chromosomal abnormalities as the most commonly recorded non-neonatal cause of death category for 0–19 year-olds amongst causes likely to require palliative care (22%), followed by diseases of the nervous system (19.4%), neoplasms (19.1%) and “certain conditions originating in the perinatal period” (11.2%) [9]. In Wales the combined categories of “neoplasms” and “diseases of the blood-forming organs and certain disorders involving immune mechanism” was the most common type of life-limiting condition that contributed to death in childhood outside the neonatal period (25%), followed by diseases of the nervous system (21%) and congenital malformation, deformations and chromosomal abnormalities (13%) [10]. The same Welsh study also examined the diagnostic labels of children with LLC who were under children’s hospices and specialist palliative care services to develop a list of diagnoses (“dictionary”) that defines the group of conditions that limit life expectancy in childhood. Three hundred and seventy-six different diagnoses of LLC were identified. The great majority of these LLC diagnoses occurred only once in the study period of 5 years, and only a handful of diagnoses (7 outside neonates, 5 among neonates) occurred 10 times or more. What this means is that in the UK the model of paediatric palliative care cannot be a “one-fit-all” but needs to be flexible enough to accommodate for variable disease trajectories whilst sustaining consistency in quality of care provided. The types of diagnoses that may be more characteristic of the UK paediatric population include cystic fibrosis (gene carrier rate of 1 in 25) which has a prevalence rate of 3 per 10,000 in people under 20 years old [14]. There are some inheritable metabolic and neurodegenerative conditions that are more prevalent amongst the expanding ethnic minority populations that have high rates of consanguineous marriages. The accurate prevalence data on specific LLC are limited to small number of conditions such as cystic fibrosis and cancers that have national registries. In the UK 1,700 children under 15 years of age are diagnosed with cancer each year and almost 300 children die from cancer each year [15]. Around 1 in 500 children in the UK will develop some form of cancer by 14 years of age. Leukaemia is the most commonly diagnosed cancer and together with brain tumors account for more than half of all childhood malignancies.

16.3.4 Advocacy Groups

The main advocacy groups for children’s palliative care in the UK are;

• Association for Children with Life-Threatening or Terminal Conditions and Their Families (ACT) • Children’s Hospices UK • Association for Paediatric Palliative Medicine (APPM).

16.3.4.1 ACT ACT is the UK-wide charity organisation that aims to achieve the best possible quality of life and care for every child and young person who is not expected to 276 M. Baba and R. Hain reach adulthood, by helping families and all professionals that work with them [16]. ACT was founded in 1988 by Sister Francis Dominica (founder of Helen House hospice for children), Professor David Baum and Robert Woodward. ACT has three strategic objectives:

• To campaign for improved provision of children’s palliative care services. • To work with professionals to support the delivery of the best care possible. • To inform families and empower them to have a voice in the development of the services and policies that affect them.

16.3.4.2 Children’s Hospice UK Children’s Hospice UK is the national charity that gives voice and support to all children’s hospice services [17]. Their vision is for every child and young person who is not expected to reach adulthood – and their family – to have awareness of, and access to, the highest standards of care and support close to or in the home. Their work includes:

• Care development, helping children’s hospices to continually develop and improve the care and support they provide to children and families. • Raising awareness of children’s hospices, so that all children and families know about the unique range of services they provide. • Fundraising for children’s hospices, helping them to continue to provide their services for free to those children and families that need them. • Campaigning and lobbying on behalf of children’s hospices, ensuring their voice is heard by the government.

16.3.4.3 APPM APPM [18] was formed in November 2009 following a merger of the Children’s Hospice UK doctors group and the British Society for Paediatric Palliative Medicine (BSPPM). It is an independent organisation that represents doctors working in paediatric palliative care across all care setting in the UK, including paediatricians and general practitioners with special interest in paediatric palliative medicine. The aims of the APPM are:

• To promote the practice of paediatric palliative medicine and the development of standards of good practice. • To ensure appropriate standards of education, training and practice of paediatric palliative medicine including through the work of the RCPCH, the Royal College of General Practice (RCGP) and other relevant institutions. • To promote equity of access to appropriate and effective paediatric palliative care services. • To identify priorities for paediatric palliative care research, providing direction and facilitation for research as appropriate. 16 Paediatric Palliative Care in the United Kingdom 277

• To promote co-operation and collaboration with other professionals, statutory and voluntary organizations involved in the care of children and young people with life-threatening and life-limiting conditions and their families. • To maintain formal links and effective communication between relevant medical colleges and other national and international bodies.

Children’s hospices advocate for paediatric palliative care both as a group and individually. There are other charity organisations such as “Help the Hospices”, and those specific to some life-limiting conditions such as cystic fibrosis, muscular dystrophy, spinal muscular atrophy, mucopolysaccharide diseases, etc. There are some public sectors such as children’s community nursing and supportive care teams in various parts of the UK and children’s hospitals such as Great Ormond Street Hospital who also play a significant advocacy role. Many of these groups are members of the International Children’s Palliative Care network, which promotes the best quality of life and care for children and young people with life-limiting conditions, their families and carers world-wide.

16.3.5 Guidelines

Guidelines on referrals and service provision are provided by ACT as follows:

• A guide to the development of Children’s Palliative Care services, First edition January 1997 [5], Second edition. 2003 [12] • Integrated Multi-agency Care Pathways for Children with Life-threatening and Life-limiting Conditions. 2004 [13] • The Transitional Care Pathway; A framework for the development of integrated multi-agency care pathway for young people with life-threatening and life-limiting conditions. 2007 [19] • Neonatal Pathway for Babies with Palliative Care Needs. First edition. 2009 [20]

Although these do not give speciﬁc diagnoses or timing for referral to palliative care service, their general guidance and principles are adopted by the local palliative care team for the needs-led service. In the UK there is an independent organisation called the National Institute of Clinical Excellence (NICE) that provides national guidance, sets quality standards and manages a national database to improve health and prevent and treat ill health. After a rigorous evaluation of the best available evidence NICE makes recommendations to the NHS on new and existing medicines, treatments and procedures, treating and caring for people with speciﬁc diseases and conditions. Their guidance on palliative care is found in “Improving supportive and palliative care for Adults with cancer” [21] and “Improving outcomes in children and young people with cancer” [22]. 278 M. Baba and R. Hain

16.3.6 Identifying Children for Palliative Care Programmes

16.3.6.1 Barriers The barriers to identifying children with palliative care needs arise from the very nature of paediatric palliative medicine which deals with a wide range of conditions with variable trajectories and outcomes. These children access health and social services at different levels and points in time. As mentioned before, until recently, there had been no uniform data collection system that accurately and regularly identified children with palliative care needs and the nature of their conditions and services available to support them. Paediatric palliative medicine is a relatively new specialty and people’s ideas of palliative care are often rooted in the well-established adult palliative care field. These two factors are considered to be contributing to the under recognition of the life-limiting nature of non-malignant conditions and specific palliative care needs of children with these conditions. Studies have shown that only half of children in the UK who would benefit from palliative care are referred [10].

16.3.6.2 Strengths There are some strategies already in place to overcome these barriers. These include education and training, development of a dictionary of life-limiting conditions and various government initiatives. Having clear definitions of children’s palliative care and what conditions are considered life-limiting and life-threatening is crucial for accurate identification of children with palliative care needs. As mentioned before ACT and RCPCH have provided clear definitions and these are becoming increasingly recognised. ACT also promotes education and training of professionals and families. Professional training needs are increasingly recognised and addressed by RCPCH and the Royal College of Nursing (RCN).

Development of Life-Limiting Conditions “Dictionary” A Dictionary of LLC in children is currently under development [10] which would allow more explicit deﬁnition of LLC and more precise estimation of incidence and prevalence of LLC, supporting rational and evidence-based service. It would be a practical tool for identifying LLC using ICD10 codes that allows extraction and analysis of data from existing cohort databases such as the Millennium Cohort Study (www.cls.ioe.ac.uk) which is the most recent and the largest longitudinal birth cohort study in the UK. It follows the lives of around 19,000 children born in the UK in 2000/2001.

ACT Minimal Data Set and Service Mapping Initiative There has been an increasing interest by the UK government in palliative care as reﬂected in the number of initiatives, guidance and policies published over the past 16 Paediatric Palliative Care in the United Kingdom 279 few years. One of the initiatives has resulted in the development of ACT minimum data set and service mapping initiative, called Making Children and Young People Count [23]. It is a joint project between ACT and Association for Children’s Hospices (ACH) and has been launched in 2009 with the aim of developing a tool to enable the standardised collection of epidemiological data on children with life- threatening and life-limiting conditions and the support services that are available to them. It is hoped that over time the joint project helps obtain information on trends which can assist with future predictions and the respective planning to meet the future needs. A large variation in the number of children with palliative care needs across the UK makes the local needs assessment particularly important for conﬁguration of appropriate and sustainable services [24].

16.4 Settings of Care

16.4.1 Where Children’s Palliative Care is Provided in the UK

Most children with life-limiting conditions spend the majority of time at home or in school. Day to day care of these children therefore is set in the community. Local primary care as well as outreach services from secondary and tertiary care allows access to medical and nursing expertise in palliative care wherever the child is. The National Health Service is organised and delivered in a way that offers such ﬂexibility (see Section 16.3). While care is provided in the community for most of the children’s lifetimes, many children still die in hospital in spite of families’ wishes for the death to take place at home [9, 25]. Paediatric oncology outreach nurses (POONs) have been endeavouring to facilitate such wishes [26]. Advanced and emergency care pathway plans are also being developed in order to achieve death in preferred place for children with LLC. The three main places of care are community, hospice and hospitals (Fig. 16.1).

16.4.1.1 Community This is where the majority of children with palliative care needs are and care is provided to meet their complex multidimensional needs. Increasingly, models of paediatric palliative care based on local multidisciplinary palliative care teams are being established. In these models, not only are the primary care team involved but also the secondary or even tertiary care providers reach out to support children and young people in the community. Nursing care in the community is provided by the community children’s nurses (CCN), school nurses, district nurses and outreach nurses of certain specialties such as oncology, neurology, respiratory medicine and neonatology. Medical care may be provided by GPs, community paediatricians or paediatric palliative care specialists. The multidisciplinary team also includes social workers, psychologists, occupational therapists, physiotherapists and educationists. Children are supported in their play groups, nursery, child development centres and schools (mainstream or special educational needs). 280 M. Baba and R. Hain

Fig. 16.1 The structure of welsh paediatric palliative care service

16.4.1.2 Hospice There are currently 45 children’s hospices in the UK, which are funded mostly by charity. They are, however, working increasingly closely with statutory services. Admissions to children’s hospices are primarily for respite/short breaks. Other services provided by hospices include;

• Symptom control • The provision of therapies including play and social activities • Activities for siblings • Counselling • 24 h advisory support to families and professionals • End-of-life care either at home or in the hospice • Pre and post bereavement support for all family members.

Some hospices also provide day care facilities and family support outreach services.

16.4.1.3 Hospital A child may be admitted to hospital for acute care such as symptom control, treatment of intercurrent illness or management of acute deterioration of their life- limiting condition. In the UK access to hospital care is gained through a referral by 16 Paediatric Palliative Care in the United Kingdom 281 a GP or through the accident and emergency department. Children with LLC, however, are usually well known to the local hospital and specialist centre and may be granted an open access to the hospital wards. As mentioned before hospital is where the majority of children’s deaths occur. There may be an option for the child to be transferred from hospital (intensive care unit or ward) to hospice or home for end- of-life care, where such services are available as to allow this to happen according to the family’s wishes. Other activities within the hospital setting include symptom care clinics held in the outpatient department in some hospitals. Other specialist care required by children with certain LLC is also provided either as outpatient or inpatient. The secondary care services provided by the local hospitals are supported by the tertiary care services (i.e., specialist care) at children’s hospitals in major cities. Specialist paediatric palliative care services are currently available in a small number of tertiary centres.

16.4.2 Challenges and Strategies

One of the challenges we face in our current care setting is that children are not necessarily being referred to appropriate services, be it due to the lack of knowledge by the referrers or the lack of availability of specialist palliative care. Around half of children who could beneﬁt from hospice care are never referred and many children who die of life-limiting conditions have not been referred to specialist palliative care services [10, 27]. Accessibility to specialist palliative care services is variable across the UK and the geographical distance to specialist centres places another barrier to accessing services [24]. Provision of care across the wide range of care settings can complicate care coordination and communication. Although access to different levels of care may be easy and ﬂexible, sharing of the care between different levels within the NHS can be challenging let alone sharing of care between the statutory and voluntary services which children’s hospices are. There are, however, strategies to address these issues as demonstrated by the paediatric palliative care service in Wales. The three tier system that includes all professional groups at each level, both from statutory and voluntary sectors, provides structure to the services provided (Fig. 16.1). Furthermore, the multidisciplinary palliative care network across Wales ensures co-ordination and communication. The Welsh paediatric palliative care service will be further described in the last section of this chapter.

16.5 Providers of Care

The providers of palliative care for children and young people come from various disciplines and include both statutory and voluntary sectors. They include nursing, medical and social care, education, mental health, allied health professionals and various CAM therapies, spiritual/religious bodies and some voluntary organisations that offer practical support for children and families. Providers work across 282 M. Baba and R. Hain

Fig. 16.2 Some members of The Welsh Paediatric Palliative Care Team, at weekly “ward round” meeting. (From left to right, POONS, Secretary/team administrator, Specialist Paediatric Palliative Care Nurse, Consultant/Lead clinician in Paediatric Palliaive Medicine (Author), Consultant in Community Paediatrics and Paediatric Palliative Medicine, Specialist Trainee in Paediatric Palliative Medicine (Author), Specialist Community Paediatric Palliative Care Nurse) various settings described in the previous section to meet physical, psycho-social and spiritual needs of children and families (Fig. 16.2).

16.5.1 Roles of Care Providers

16.5.1.1 Nursing Care Nursing care for children with palliative care needs are provided mainly in the community and by the community children’s nursing (CCN) team. They respond to local needs and take account of the need to prevent hospital admissions, facilitate early discharge, and care for children with complex needs including those with palliative care needs. Specialist children’s palliative care nurses are increasing in number and they form community palliative care nursing teams such as Diana Teams and Big Lottery Fund Teams. Community nurses may act as “key workers” for the family, to assess needs and facilitate access to appropriate services.

Specialist Paediatric Outreach Nurses They work in liaison with CCN to deliver specialty care in the community. They have expertise in managing symptoms associated with speciﬁc conditions and supporting families in caring for children at home. They are usually involved from the point of diagnosis and facilitate transition to palliative care where necessary [28]. 16 Paediatric Palliative Care in the United Kingdom 283

Historically specialist outreach teams, particularly oncology, have provided a large part of palliative care for children. Other nursing professionals in the community who may become involved with the care of children with palliative care needs are school nurses, who work closely with community paediatricians, and district nurses who offer practical nursing support.

16.5.1.2 Medical Care In the UK we have specialists in paediatric palliative medicine (PPM), a specialty that has been given a formal recognition as a paediatric specialty in 2009, thus completing the four tiers of medical expertise (Table 16.4). GPs are often involved with clinical management of children with palliative care needs as well as supporting their families, as part of the primary healthcare team. Community paediatricians are involved with care of children with complex long-term medical needs and disabilities that often include children with palliative care needs. Hospital paediatricians (general paediatricians and paediatricians with special interest in palliative medicine) provide medical care locally with support from PPM Specialists in tertiary centres. Children with LLC would also receive continuing input from other specialist paediatricians relevant to their conditions, such as oncologist, neurologist and metabolic medicine specialists. Some of them may have a particular interest in palliative care. In children’s hospices medical care is provided by GPs and palliative care specialists. The competencies and skills required from each levels of expertise in paediatric palliative medicine are set out in the training curriculum, which will be discussed in the later section.

16.5.1.3 Social Care Social workers contribute to psycho-social support of children and families, by assessing their needs and ensuring provision of services to meet those needs, which may include provision of aids and adaptations, transport, short breaks and respite care and access to funding.

Table 16.4 Levels of ∗ competencies in paediatric Level Competencies palliative medicine [42] 1 Newly qualiﬁed doctors 2 All Paediatricians 3 Paediatricians from other specialties (such as oncology or neurology) who had declared a special interest in palliative care 4 Specialists in the ﬁeld of PPM

∗Competencies are deﬁned as testable skills, which could be a practical skills, an item of knowledge or simply an understanding or an attitude. 284 M. Baba and R. Hain

16.5.1.4 Hospices A range of services are provided by multidisciplinary professionals, including nurses, various conventional and complementary therapists, counsellors, chaplains, family link workers and sibling care workers. They work together to meet physical, emotional, social and spiritual needs of children and families. Some hospices are offering their service as an outreach service as part of delivering palliative care at home. Children’s hospices play an important role in supporting families to spend quality time with their children at home as much as possible.

16.5.1.5 Other Voluntary Service Providers There are many charities that provide different services including short breaks, supporting the family in their home, jointly funding posts for speciﬁc conditions, education, rehabilitation and bereavement support.

16.5.1.6 Therapists Physiotherapists, occupational therapists, speech and language therapists, music therapists and play specialists as well as complementary therapists contribute to improving quality of life for children and their families by addressing their multidimensional needs.

16.5.1.7 Education and Play Teachers and support staff in mainstream and special schools, educational psychologists, hospital teachers, and home tutors may become involved with school age children; and nursery nurses and play specialists may become involved with pre-school children. Their role is to provide education and promote continuing development as well as provide some continuity and normality in the children’s lives to improve the children’s physical, mental and social well-being.

16.5.1.8 Mental Health Service Clinical psychologists and psychiatrists are accessed through primary care mental health service and Child and Adolescent Mental Health Service (CAMHS) for children and young people who require more intense specialised intervention such as cognitive behavioural therapy, family therapy and pharmacological therapies.

16.5.1.9 Spiritual Care Chaplains are available in most hospitals and adult hospices. However, the presence of chaplains is less consistent in children’s hospices. Multi-faith chaplaincy caters for people with different religions. Local spiritual and religious leaders may be involved to meet speciﬁc needs of families with different spiritual, religious and cultural backgrounds. 16 Paediatric Palliative Care in the United Kingdom 285

16.5.2 Education of Care Providers

The last 5 years have seen considerable development of educational programmes for children’s palliative care in the UK. This has been particularly marked in postgraduate clinical training for doctors, with the recognition in 2009 of paediatric palliative medicine (PPM) as a subspecialty within paediatrics. This means it is now possible for paediatricians to specialise in PPM on completion of a formal 2-year training scheme in Cardiff or London. There remain, however, few postgraduate academic qualifications in palliative care for children. There is only one postgraduate masters programme in paediatric palliative medicine/care, based at Cardiff University [29]. A number of other postgraduate qualifications in the UK, however, include relevant teaching. In Nottingham, for example, palliative care is an important theme within a postgraduate qualification in paediatric nursing [30] and some adult palliative care programmes include modules in the paediatric specialty. There is no specialist training for nurses in paediatric palliative care in the UK. Nurses can, however, of course access most of the university postgraduate courses mentioned above, many of which were designed with nurses in mind. There is a movement by the Royal College of Nursing to define a set of nursing competencies for children’s palliative care, and this is the first step towards developing a curriculum that would allow specialist nursing training. It seems likely this curriculum will become available in the next 2–3 years. In most years, there are several short courses and one-day teaching events, often run by individual children’s hospices, or by the APPM. These are often aimed at specific professional groups, but are usually open to all. The APPM also runs an annual session at the national UK paediatric conference, and there is a biennial international conference in PPM held in Cardiff which focuses on research. There has also been increasing recognition that there is an unmet need for education and training among many non-professional carers, particularly parents. The families of children with LLC will typically need to acquire technical skills, for example in managing feeding, tracheostomy tubes, dealing with seizures and managing pain, that many professional carers would consider challenging. ACT and Children’s Hospices UK are identifying and planning to address some of these learning needs. Training opportunities for carers will hopefully be a significant development over the next few years as these initiatives begin to bear fruit. The main official body governing paediatric palliative medicine is the College Specialist Advisory Committees (CSACs) within the RCPCH. The CSACs advise on aspects of specialist training relating to each of the paediatric sub-specialties. They are involved in curriculum development for each of their specialties and will advise on appropriate assessments particularly for level III trainees. The UK medical curriculum, on which sub-specialty recognition was based, provides a useful model for other countries, and perhaps other professions, to follow. It was developed by a group of doctors drawn from family practice and paediatric backgrounds, all working in children’s palliative care. The group defined four levels 286 M. Baba and R. Hain of expertise they felt should be expected from doctors (Table 16.4). Although the curriculum is in routine use in the UK, it has yet to be subjected to any form of evaluation. In the meantime, however, it is a de facto standard for training across Europe, since recognition as a specialist in any European country is considered to be recognition in all. The means of assessing trainees’ achievement of competence is laid out by RCPCH. To these, the Specialist Advisory Committee in PPM has added some assessment tools specific to the specialty, including the formative assessments through portfolios of purposively selected clinical cases. Again, these assessment tools have not been evaluated in the context of PPM, but most are tried and trusted in related training areas. In summary, for doctors in the UK, the expectations of training in PPM have now been set out quite clearly. There is a well structured postgraduate training programme in line with other paediatric specialties, leading to UK and European recognition as a specialist in paediatric palliative medicine. Outside medicine, education and training in the UK is less consistent. There are few opportunities for formal training for non-medical health professionals, but there is a range of courses available from universities that lead to postgraduate qualifications. Most are in related specialties such as adult palliative care or child health, with paediatric palliative care being offered as a module. There is currently only one postgraduate course in paediatric palliative care itself, and this is only available to doctors or nurses. There is increasing recognition of the needs of nonprofessional carers for training and education; as yet, provision for this is local and patchy, but it seems likely it will improve over the next few years thanks to work being undertaken by ACT and Children’s Hospices UK. Finally, work being done by the RCN setting paediatric palliative care competencies for nurses is expected to form the basis for formal training programmes for nurses in the near future.

16.6 Provision of Services

16.6.1 Needs Led Service Provision

“Children with life-limiting conditions and their families have a range of speciﬁc needs and services should be provided on a needs-led basis” [5]. The needs of the child and family are assessed by the local multidisciplinary team, with a key worker coordinating this process. A care plan is drawn out and services are provided to meet those needs. An ACT care pathway has been developed to promote consistency of care provision. Entry to the care pathway is at the point of diagnosis or recognition of life-limiting condition. In ACT’s guide to the development of children’s palliative care service, families’ needs are considered under the following 10 headings:

1. The need for information 2. Individual assessment of need for each family and the preparation of care plans 16 Paediatric Palliative Care in the United Kingdom 287

3. Management of the child’s physical symptoms 4. Addressing emotional and behavioural problems 5. Enhancing the quality of life for the child 6. Support of the family 7. Assistance with ﬁnancial concerns and practical matters 8. Short-term breaks (respite) 9. Care around the time of death 10. Bereavement care.

Services to meet these needs are provided by the individuals described in the previous section.

16.6.2 Coordination of Care

Coordination of care for individual families is carried out by a key worker, who, having assessed the needs of the child and family, coordinates services, provides some of the child’s care, ensures that all equipment is available, provides access to other resources and offers emotional support. They are the primary point of contact for the family and other care providers involved. The role of key worker is often taken up by a CCN, specialist outreach nurse or a social worker.

16.6.3 Integration of Care

In paediatric oncology a system of service provision for palliative care has been established in most places. Specialist outreach nurses usually coordinate care and provide care alongside the CCN service. For children with non-oncological LLC, integration of palliative care requires a health care professional who can assess the child’s total palliative care needs alongside medical treatment for the speciﬁc disease or condition. Children with LLC often have their care managed by more than one paediatrician, who may be a tertiary specialist or local paediatrician. Some of these paediatricians may have interest and experience in palliative care. Paediatric palliative medicine specialists, therefore, act as a resource and support the local care providers or take the lead in needs assessment and provision of palliative care, depending on the circumstances. Introduction and activation of palliative care may be complicated by the illness trajectories of some LLC (ACT categories 2 and 3). Early integration of palliative care is therefore encouraged even when active palliative care is not required immediately.

16.6.4 Continuity of Care

Good communication between providers is crucial in instances where so many people are involved in children’s care in different settings. Clinical contact (e.g., hospital admission, clinic attendance, home visits) is usually followed by a summary letter 288 M. Baba and R. Hain which is normally sent to the GP and copied to all relevant people including parents. In the UK, electronic patient record systems are well established in general practice and similar systems are being introduced to some hospitals. An electronic communication system that crosses the primary and secondary care boundaries, however, is yet to be developed. Transition from paediatrics to adult services becomes increasingly relevant in palliative care as children with life-limiting conditions are surviving longer. Transitional care is an area that is being developed, not only in palliative care but also in many other specialties that deal with chronic conditions. Currently, in paediatric palliative care, some children’s hospices and adult hospices are developing transitional care units and facilities. Some of the paediatric services are transferred directly to adult services, e.g., from children’s disability teams to adult disability teams. In other instances, paediatric services continue to provide care with an overlay of other services, e.g., children’s outreach nursing may continue while Macmillan nurses become more and more involved with young people with cancer. Macmillan nurses are registered nurses with training and experience in cancer or palliative care, whose work is funded by the NHS as well as their charity organisation, Macmillan Cancer Support [31]. In Wales, an adult palliative medicine consultant has been appointed to take the lead in the transitional care to ensure that the process takes place smoothly. The case studies in this chapter illustrate some examples of palliative care received by children with life-limiting conditions in the UK.

16.6.5 Barriers and Strategies to Effective Service Provision

16.6.5.1 Barriers Service reviews reveal several problems with the current service delivery model in the four countries of the UK [24, 32–34]. These problems include;

• Inequality in services/commissioning/patient population • Uncoordinated approach to planning – duplication of services in some areas and lack of provision in other areas • Overall shortage of community based services • Organisational, budgetary and geographical boundaries • Frustrated workforce • Insufﬁcient funding.

16.6.5.2 Strategies Recent published strategies in the UK include the English government initiative “Better care, better lives” [35] and the framework for service and workforce development produced by ACT “Right people, Right place, Right time”. Both of these published strategies provide guidance about developing services that deliver care in the most appropriate settings by the most appropriate service providers and 16 Paediatric Palliative Care in the United Kingdom 289 ensure consistency of access to services. In Wales and Scotland service reviews have led to development of care standards to improve and ensure quality in palliative care service for children [36, 37].

16.7 Research

Research into paediatric palliative care has been slow to develop in the UK and has developed from two sources. A small number of universities have appointed academics in paediatric palliative care itself, who have attempted to establish and expand a research programme in the specialty. These research programmes number perhaps three or four, mostly led by nurse researchers. A somewhat larger number of academic institutions with established research programmes in related areas have extended their research programmes into paediatric palliative care. For example, centres that focus on the needs of children with chronic disability, or on measurement of quality of life in children, have naturally established collaborations with clinicians and researchers working in the field of PPC. These collaborations have often been effective in bringing together representatives of many different disciplines and professions in a way that individual academic programmes focusing on palliative care itself have not been able to do. Barriers to expanding programmes of palliative care research in the UK have resulted historically from its relatively low priority among funders. Few major funders give palliative care research a high priority when faced with choosing how to distribute limited resources. Charitable funders have often been reluctant to consider palliative care proposals, feeling their donors hope for the discovery of cure, rather than accepting the inevitability of death. Children’s palliative care charities, on the other hand, have usually emphasised the needs of individual families for breaks or “dream experiences” rather than research, which is often seen as abstract and removed from patient experience. This problem has been compounded by the difficulty of developing proposals that can answer important research questions. Randomised controlled trials are difficult to design in a specialty with small patient numbers and a high rate of attrition. In order to recruit reasonable numbers of patients, many clinical centres must work together and this has been difficult without a national or international research body. There are now several candidate bodies who could take this on, but as yet multicentre trials are few and far between. Finally, UK universities are increasingly required by the government to show that they are producing research in a small number of areas that will have a significant impact on the greatest possible number of people. This laudable aim means that Universities are often loath to support PPC research, which addresses the needs of small numbers of patients and does not attract major grants in the UK. Studies that are published are often most appropriately placed in paediatric or palliative medicine journals, neither of which typically reaches a wide international audience. There are a number of solutions to this. The development of PPC research from existing research programmes in related specialties is encouraging and may 290 M. Baba and R. Hain increasingly result in good quality academic research. These research programmes offer support to clinicians (medical, nursing and indeed other professionals) to develop important clinical research questions, and then offers the opportunity for them to work with academic institutions to develop a project that will answer their research questions. Currently, good quality palliative care research often emanates from programmes in related paediatric fields; one possibility is that adult palliative care research programmes could also be used as a launch-pad for paediatric studies. The recent appointment in London of the UK’s first professor of palliative care is an exciting initiative that provides the potential to begin to coordinate centres across the UK, addressing some of the difficulties of patient recruitment. Furthermore, it offers for the first time the prospect of a multi-professional academic team; an ideal approach to paediatric palliative care research which does not naturally fall within the remit of any one discipline. Another way of approaching the problem of too few patients is to consider clinically relevant research questions that do not need to be answered by a randomised controlled trial. Again, the appearance of good qualitative research is particularly encouraging in this respect. There is also some evidence that the expectations on universities are becoming more realistic, and coming more into line with clinical priorities than has previously been the case. There is still too little distinction made between clinical and pure science research in this respect; nevertheless, there has been some movement and in the future perhaps there will be more. Until then, paediatric palliative care research in the UK will always struggle to be given the priority by universities that families and clinicians ideally demand.

16.8 Health Policy Reform

There have been a number of policies and plans by the government over the past few years to promote health and well-being of children and young people, which are also relevant to children with palliative care needs (Table 16.5) and there have also been other policies and plans that are more speciﬁc to children’s palliative care in the four countries (Table 16.6). Most recently the English government announced a proposal of major NHS reforms in a White Paper entitled, “Equity and excellence: Liberating the NHS” [38]. It sets out plans to give more power to patients and health professionals, particularly GPs, and reduce bureaucracy by shifting power from the centre. By April 2012 it proposes establishing the independent NHS commissioning board, new local authority health and well-being boards replacing the SHA and PCT. This reform is likely to have an impact on commissioning and provision of children’s palliative care services. The structure and organisation of the NHS in the four countries are becoming increasingly different from each other as each undertakes reforms and develops their own policies and plans. It is therefore crucial that the advocates of paediatric palliative care stand ﬁrm amidst these evolutions in each country to 16 Paediatric Palliative Care in the United Kingdom 291

Table 16.5 Government policies and strategies relevant to children with palliative care needs

Year Policy/plan Department

2004 Every child matters [43] Education and skills Health The national service framework for children, Young people and Education and Skills maternity services [44] Health 2007 Making it better for children and young people [45] Health Aiming high for disabled children [46] Education and skills The children’s plan [47] Children, schools and families 2009 Child health strategy [48] Health Government announced £30 million for children’s palliative care in PCT baseline, as part of an overall £340 million funding package for services for disabled children 2010 Government has announced £800 million will be provided to Education local authorities over the next 4 years to fund short breaks for families with disabled children.

Table 16.6 Government policies and plans speciﬁc to children’s palliative care

England 2007 An independent review of • Led by Professor Sir Alan Craft children’s palliative care and Sue Killen. [24] • A review of the funding and sustainability of the children’s palliative care sector as a whole. • Recommendation made to the government to develop a national strategy for children’s palliative care, to raise its status, improve understanding and provide a framework within which service could be planned and delivered in a cohesive way. 2008 Better care: better lives • A government strategy launched in [35] response to the independent review. • It sets out the government’s direction for the development of children’s palliative care service across England. Wales July 2008 The sugar report [32] • Core elements of palliative care services for adults and children established. • Means for measuring the quality of care determined. Oct 2008 Palliative care • In response to the sugar report an implementation group implementation group has made report [49] recommendations on the most appropriate use of the central funding. 292 M. Baba and R. Hain

Table 16.6 (continued)

Oct 2008 All wales palliative care • This report is part of the Children standards for children and Young People’s Specialised and young people’s Services Project (CYPSSP). specialised healthcare • Standards developed following a services [36] service review. 2011 All wales palliative care • Wales palliative care standards are standards [50] being drafted that include children’s palliative care services. Scotland 2008 Living and dying well [37] • A national action plan for palliative and end of life care in Scotland. • Annual funding of £3million was announced to support the implementation of this plan. 2010 Palliative care (Scotland) • Places a specific statutory duty on Bill [51] Scottish Ministers to develop and provide a national palliative care service • Scottish Minister is to report annually to Parliament on a range of indicators related to palliative care. Northern 2000 Partnership in caring: • Identified palliative care needs for Ireland standards for service: a children and young people. review of palliative care • Identified deficits in service [41] provision and made recommendations. 2010 Living matters dying • Five year strategy providing vision matters: a palliative and and direction for service planning end of life care strategy and delivery. for adults in northern • Includes young people’s transition Ireland [37] care. ensure the continuing development of palliative care services, aspiring to the model of paediatric palliative care as envisaged by ACT and RCPCH.

16.9 Highlight on Local Programmes

16.9.1 Children’s Palliative Care Service in Wales1

Wales has seen a rapid development in children’s palliative care services over the past few years, closely achieving the vision that ACT set in 1997. The service in Wales allows locally delivered palliative care at home, hospice, schools or hospital

1 This section is based on the interview with Dr. Richard Hain. See [39]. 16 Paediatric Palliative Care in the United Kingdom 293 wards. To support delivery of care close to home, there is a country-wide managed clinical network linking primary paediatric care, local hospitals and the tertiary specialist center at the Children’s Hospital for Wales in Cardiff. One foundation of this development was the well-established adult palliative medicine specialty and its support for developing children’s services. The availability of paediatricians with particular interest, vision and training in paediatric palliative medicine was another key factor. The well-defined population and devolved health service in Wales were also favourable contributing factors. Training of doctors and nurses are an essential part of the service development, helped by the MSc course in palliative care/medicine at Cardiff University, which is the only course in the UK that has a paediatric option. One of the challenges faced in Wales in the process of developing children’s palliative care service was to help people realise the need for a palliative care specialty without marginalising the team already involved. In other words, it was difficult for the children’s palliative care service to find its place as a specialist resource and support service for other health professionals who cared for children with LLC and palliative care needs. This challenge has been overcome by the team’s efforts to raise awareness that they are available at any time but not pushing into the work of other health care colleagues. Remaining challenges include inconsistent recognition of when palliative care is appropriate and available for children, and training of all those who are involved in children’s palliative care. The vision is to achieve in the paediatric palliative medicine training the comprehensive and high quality training currently offered in adult palliative medicine. Paediatric palliative care services are also well developed in the other three countries of the UK. A range of different models are evolving from a wide range of expertise (e.g. community paediatrics or community nursing base and oncology base). Inevitably paediatric palliative care in the UK will always be a compromise between what is ideal and what is available. Having paediatric palliative medicine is important and although it may not be directly transferrable to other parts of the world because of the differences in health care systems and culture, the structure and delivery of paediatric palliative care services in Wales can be an effective model.

16.10 Conclusion

Paediatric palliative care in the UK is rapidly developing not only in clinical practice but also in education and research. The importance of palliative care for children is being increasingly recognised by the health professionals and the policy makers [52, 53]. With the limited resources within the National Health Service local needs assessment is essential in meeting the children and families’ needs effectively as well as providing a service structure with three tiers of expertise and a strong network across the UK. 294 M. Baba and R. Hain

Case Study 1: A Teenager with Cancer (ACT Category 1) Peter is a 17 year-old with a brain tumour, which has relapsed for the second time. He had suffered so much through aggressive treatment in the past that he decided against further curative treatment. His medical care was taken over by the transition palliative care consultant, who is a part of the paediatric palliative care team; but his paediatric oncology outreach nurse (POON), who is also part of the palliative care team, remained his key worker. He had palliative chemotherapy for a while and was attending college until recently. His condition gradually deteriorated and Peter declined further chemotherapy because of side effects and no observed or perceived beneﬁts. He is now being cared for at home by his mother. The POON and social worker visit him regularly. His care package has been put together by the local social and health care team which consists of twice daily care by a district nurse and care assistant as well as night sitters. His mother is being treated for her depression by his GP and she receives much psychological support from the POON and social worker. Peter’s siblings are also supported by the sibling care worker from children’s hospice. Peter is now on continuous subcutaneous infusion of drugs to control his pain, nausea and anxiety, prescribed by the palliative care doctor, initiated by the POON and monitored daily by her or the district nurse. His case is discussed in the weekly palliative care meeting and he is often visited by his palliative care consultant. Although his condition continues to deteriorate, Peter is comfortable and still manages to go out when he is feeling well.

Case Study 2: A Boy with Muscular Dystrophy (ACT Category 2) Daniel is 12 years old and has Duchenne muscular dystrophy which was diagnosed antenatally. His uncle died of this condition and his older brother is also affected. He has regular appointments with his paediatric neurologist and cardiologist. He started using non-invasive positive pressure ventilation at night time which is being supervised by the specialist respiratory nurse. He mobilises with an electric wheelchair arranged by his social worker and occupational therapist, both of whom are part of the children’s disability team. He attends special needs school. His physiotherapist sees him at school. He uses children’s hospice for respite care two or three times a year. His older brother is now accessing adult hospice for respite care. A family link worker from children’s hospice continues to support the whole family.

Case Study 3: A Boy with Neurodegenerative Condition (ACT Category 3) Andrew is 8 years old and has an undiagnosed neurodegenerative condition. He has been under the care of a neurologist since infancy. He also receives 16 Paediatric Palliative Care in the United Kingdom 295

care from the local community paediatrician and children’s disability team. Andrew attends special needs school. He is wheelchair bound and requires regular review by a physiotherapist and occupational therapist who see him at school. He has been accessing children’s hospice for respite care 3–4 times a year. More recently his condition has been deteriorating and requiring frequent emergency admissions to hospital or hospice for management of recurrent chest infection and other symptoms such as pain, dyspnoea and distress. He was referred to the paediatric palliative medicine specialist by his neurologist for symptom control. His school nurse raised concerned that his family is not coping well with three other young children and Andrew’s symptoms becoming increasingly difﬁcult to control. A meeting was held with parents, social worker, CCN, palliative care nurse, school nurse, GP and the family link worker from children’s hospice who chaired the meeting. An increased care package was put in place to help the parents care for their children and manage Andrew’s medications. In view of his continuing deterioration, a meeting between Andrew’s parents and palliative care specialist was arranged to discuss an advance care plan. Andrew’s older brother has signed up to go on outings with a siblings support charity group.

Case Study 4: Neonate with HIE (ACT Category 4) Jessica suffered severe hypoxia at birth. She required seizure treatment and mechanical ventilator support. She was extubated but developed pneumonia and sepsis. Her parents and medical team decided against re-intubation. She was referred to the palliative care team and transferred to children’s hospice for further care and support for the family. Two weeks later she was stable enough to go home as the parents wished. Before the discharge further discussions on emergency care planning were held with parents, hospice staff, community nursing and social care team and the palliative care team. She was visited frequently by the palliative care and neonatal outreach nurses at home. A community dietician also visited to support her feeding via nasogastric tube. She was followed up as outpatient by the neonatologist. She required several hospital admissions for recurrent chest infections and seizures. Some milder chest infections were treated at home by her GP. Her symptoms (seizures and dyspnoea) were cared for jointly by the neonatologist and paediatric palliative medicine specialist. Emergency drugs which were anticipated to be required for end of life care were prescribed and made available. Jessica’s condition gradually deteriorated and she died peacefully at home where her parents wished her death to occur. 296 M. Baba and R. Hain

References

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24. Craft A, Killen S (2007) Palliative care services for children and young people in England. Department of Health, London. DH publication 25. Higginson IJ, Thompson M (2003) Children and young people who die from cancer: epidemiology and place of death in England (1995–9). BMJ 327(7413):478–479 26. Vickers J, Thompson A, Collins GS, Childs M, Hain R (2007) Place and provision of palliative care for children with progressive cancer: a study by the Paediatric Oncology Nurses’ Forum/United Kingdom Children’s Cancer Study Group Palliative Care Working Group. J Clin Oncol 25(28):4472–4476 27. Hain RD (2005) Palliative care in children in Wales: a study of provision and need. Palliat Med 19(2):137–142 28. Hain R, Jassal S (2010) Paediatric palliative medicine: Oxford specialist handbooks in paediatrics. Oxford University Press, Oxford 29. Bodilly L (2011) Cardiff University post graduate course: Palliative medicine/Palliative care. Cardiff University. http://courses.cardiff.ac.uk/postgraduate/847.html. Accessed Feb 2011. Cardiff 30. Nottingham University School of Nursing, Midwifery and Physiotherapy (2011) Learning beyond registration: module details: Palliative and end of life care from birth to maturity. The University of Nottingham. http://www.nottingham.ac.uk/nmp/learning-beyond- registration/modules.aspx?module_id=259. Accessed Feb 2011 31. Macmillan Cancer Support (2011) About Macmillan nurses. Macmillan Cancer Support. http://www.macmillan.org.uk/HowWeCanHelp/Nurses/AboutMacmillanNurses.aspx. Acce- ssed Feb 2011 32. Wales Palliative Care Planning Group (2008) Report to the Minister of Health and Social Services: “The Sugar Report”. Wealsh Assembly Government, Cardiff 33. Audit General Scotland (2008) Review of palliative care services in Scotland. AGS/2008/8 2008 34. Henderson D (2003) Assessment of need of life-limiting children in the WHSSB. WHSSB, Northern Ireland 35. Department of Health (2008) Better care: better lives: improving outcomes and experiences for chldren, young people and their families living with life-limiting and life-threatening conditions. Crown, London 36. Welsh Assembly Government (2008) All Wales palliative care standards for children and young people’s specialised health services. Crown copyright 37. The Scottish Government (2008) Living and dying well: a national action plan for palliative and end of life care in Scotland. The Scottish Government, Edinburgh 38. Department of Health (2010) White paper: equity and excellence: liberating the NHS. TSO, London 39. Baba M (2011) Interview with Hain R. Accessed 24 Feb 2011 40. ACT (2011) General information of ACT in Scotland. ACT. http://www.act.org.uk/page.asp? section=334&search=scotland. Accessed Feb 2011 41. Department of Health, Social Services and Public Safety (2000) Partnership in caring – standards for service Northern Ireland. DHSSPS Publications. http://www.dhsspsni.gov.uk/ publications/archived/2000/pallcare.pdf. Accessed Feb 2011 42. Association for Paediatric Palliative Medicine (2008) Combined curriculum in paediatric palliative medicine. British Society for Paediatric Palliative Medicine. Association of Children’s Hospice 43. Department of Health, Department of Education and Skills (2003) Every child matters. The Stationary Ofﬁce, London. CM5860 44. Department of Health, Department and Education and Skills (2004) The National Service Framework for Children, Young people and maternity services. The Stationary Ofﬁce, London. http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/ PublicationsPolicyAndGuidance/DH_4089100. Accessed Jan 2011 298 M. Baba and R. Hain

45. Department of Health (2007) Making it better: for children and young people. The Stationary Ofﬁce, London. http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/ PublicationsPolicyAndGuidance/DH_065036. Accessed Jan 2011 46. Department of Health Department for Children, Schools and Families (2008) Aiming high for disabled children. DCSF Publication, Cheshire 47. Department for Children, Schools and Families (2007) The children’s plan. The Stationary Ofﬁce, London. CM7280 48. Department of Health (2009) Healthy lives, brighter futures. The strategy for children and young people’s health. DH publications 285374a 49. Welsh Palliative Care Implementation Board (2008) Implementation of palliative care report. Palliative care services funding 2008 to 2009. Welsh Assembly Government 50. Welsh Palliative Care Implementation Board (2011) All Wales palliative care standards. Welsh Assembly Government 51. Palliative Care (Scotland) Bill. SP Bill 50. Scotland:OQPS (2010) 52. Department of Health, Social Services and Public Safety (2010) Living matters dying matters: a palliative and end of life care strategy for adults in Northern Ireland. DHSSPS, Belfast 53. Department for Education (2010) Short Breaks. http://www.education.gov.uk/ childrenandyoungpeople/sen/ahdc/a0070553/short-breaks. Accessed Feb 2011 Part V North America Chapter 17 Pediatric Palliative Care in Canada

Kimberley Widger, Susan Cadell, Betty Davies, Harold Siden, and Rose Steele

Abstract Canada is a vast country in terms of size but with a relatively small population. It is home to North America’s first free-standing children’s hospice and to the first multicentre, pediatric palliative care (PPC) research team. Over the past 20 years, extensive growth has occurred across Canada in clinical services, research, education, advocacy, and policy related to PPC. However, challenges remain to ensure all children and families receive the appropriate services at the appropriate time in the course of the child’s disease; to make certain all children and families have the opportunity to take part in research; and to guarantee that all health professionals receive training either as part of their initial education program or through continuing education. In this chapter, we describe the context of providing PPC in Canada, outline the clinical care and services, discuss educational initiatives, provide an overview of research growth, and identify advocacy and policy work. Within specific sections we also highlight ongoing challenges to continued growth.

Keywords Canada · Canadian Network of Palliative Care for Children (CNPCC) · Canadian Network of Pediatric Hospices (CNPH) · Canuck Place Children’s Hospice · Research team: Transitions in Pediatric Palliative and End of Life Care (PedPalNET) · Canadian Hospice Palliative Care Association (CHPCA) · Team for Research with Adolescents and Children in Palliation and Grief (TRAC-PG) · Social work competencies · Nursing competencies · Medical education · Health professional education · Pediatric Hospice Palliative Care guiding principles and norms of practice · A model to guide hospice palliative care: based on the national principles and norms of practice

17.1 Pediatric Palliative Care in Canada

Canada is a vast country in terms of size but with a relatively small population. It is home to North America’s ﬁrst free-standing children’s hospice, Canuck Place in Vancouver, and lays claim to the ﬁrst multicentre, pediatric palliative

S. Cadell (B) Manulife Centre for Healthy Living, Lyle S. Hallman Faculty of Social Work, Wilfrid Laurier University, Kitchener, ON, Canada N2H 3W8 e-mail: [email protected]

C. Knapp et al. (eds.), Pediatric Palliative Care: Global Perspectives, 301 DOI 10.1007/978-94-007-2570-6_17, C Springer Science+Business Media B.V. 2012 302 K. Widger et al. care (PPC) research team, Transitions in Pediatric Palliative and End-of-Life Care (PedPalNET). Over the past 20 years, extensive growth has occurred across Canada in clinical services, research, education, advocacy, and policy related to PPC. However, challenges remain to ensure all children and families receive the appropriate services at the appropriate time in the course of the child’s disease; to make certain all children and families have the opportunity to take part in research; and to guarantee that all health professionals receive PPC training either as part of their initial education program or through continuing education. In this chapter, we describe the context of providing PPC in Canada, outline the clinical care and services, discuss educational initiatives, provide an overview of research growth, and identify advocacy and policy work. Within speciﬁc sections we also highlight ongoing challenges to continued growth.

17.2 The Canadian Context

17.2.1 Population and Geography

Canada’s estimated population is just over 34 million people spread over nearly 10 million square kilometres (km) [1] and nearly 18% of the total population is under 15 years of age [2]. The majority of the population lives within 200 km of the southern Canadian border which stretches over 5,000 km from east to west. The largest cities are Toronto, Montreal, and Vancouver with populations of 5.1, 3.6, and 2.1 million, respectively [3]. In addition Canada is ofﬁcially a bilingual country, with both English and French, although the level of services provided in both languages varies greatly across government levels. A map of Canada is provided in Fig. 17.1 showing the 10 provinces and 3 northern territories as well as major cities. The distribution of people and the physical size of Canada play a signiﬁcant role in the health of Canadians and how health care is accessed. They also create challenges in several areas of PPC and underpin a recurring theme throughout this chapter.

17.2.2 Health and Health Care

Canadians are considered to be relatively healthy with an infant mortality rate of 5.1 per 1,000 live births and a male and female life expectancy at birth of 78.3 years and 83.0 years respectively. However, 20.1% of the population are smok- ers and 51.6% of adults are overweight or obese [4]. Since health care and other services are clustered in larger metropolitan centres, but about 30% of the population lives in rural, remote, or northern communities, there are signiﬁcant regional disparities in health and health care access [5]. Residents of these communities have limited choices and higher costs in accessing many services including health care. People living in rural areas have shorter life expectancy, higher infant and 17 Pediatric Palliative Care in Canada 303

Fig. 17.1 Map of Canada total mortality rates, and higher rates of death from unintentional injury than those living in more urban areas [6]. People residing in these areas must travel over 100 km to see a family physician and even greater distances to see specialist physicians [5]. Canada’s publicly funded health care system, commonly referred to ‘Medicare,’ came into effect in 1968. Health care is seen as a ‘right’ in Canada, and the system is based on underlying values of equity and solidarity [7]. Canadians have a fierce pride in the system but at the same time, due to rising health care costs, there is a growing awareness that the system may need to change in some ways – and ways of changing are under constant examination. Medicare provides prepaid and universal health insurance that covers most ‘medically necessary’ services provided through hospitals and by physicians [8]. The system is funded through the federal government, yet, within broad guidelines, each provincial and territorial government determines how funds are spent within their jurisdiction. As well, each province or territory is subdivided into a number of health regions where local priorities are set for health spending. As a result of this multi-layered system, funds may be directed quite differently within each jurisdiction. Prescription drug benefits, dental care, 304 K. Widger et al. vision care, chiropractic services, hearing aids, transportation services, and home care programs are funded to varying degrees, or may not be funded at all, depending on the province or territory [9]. Canadians may purchase additional health insurance privately or through their workplace to provide coverage for services not included in the provincial/territorial plan or to enhance services that are covered. In summary, Canadian geography, more than the lack of funding, limits access to health care. Across Canada, pediatric care is provided through 43 tertiary, quaternary, community and regional hospitals, rehabilitation centres and home care agencies including 12 tertiary children’s hospitals. The largest children’s hospital is in Toronto, the Hospital for Sick Children (SickKids), with 369 beds. Some specialist services such as cardiac surgery and organ or bone marrow transplants are concentrated in a few tertiary children’s hospitals in Canada. A child may have surgery at a hospital with the needed specialist services then be transferred back to their ‘home hospital’ which may be one of the other children’s hospitals, or perhaps a pediatric unit located in a community or regional hospital closer to where the child lives. Many of the costs associated with travel and accommodation for family members are not funded by Medicare when a child needs to access services not available locally. Ronald McDonald Houses charge a nominal fee for families to stay in a home-away-from-home setting while their child is receiving care at one of the children’s hospitals [10]. Unfortunately, there is not always space available at a Ronald McDonald House for every family who requires it. Financial costs associated with obtaining care can become a significant burden for families. As well, families suffer emotional and social burdens as the ill child and one parent may be in a hospital far from the support of family and friends while the second parent remains home with other siblings. Family members may be separated for months, with few opportunities for visits even when the child is dying. Canada is considered to be a wealthy country, but it still is challenged to raise the standard of living for all families with 14.5% of children aged 5 years and under living in a low income family [4]. These challenges are especially salient when the family has a seriously ill child.

17.2.3 Causes of Death in Childhood

Approximately 3,500 children under the age of 19 die each year in Canada [11]. The majority of these deaths occur in infants under the age of 1 year; in addition, about 2,600 deaths each year are due to stillbirths [12]. The most common causes of death in children according to age are shown in Table 17.1. The number and causes of death in children have remained fairly stable over the last several years in Canada, with malignancies remaining among the top three causes of death in children over 1 year of age [13]. Even though the number of pediatric deaths in Canada is relatively small, approximately 4,000 children are living with a life-limiting or life-threatening illness and may beneﬁt from PPC services [14]. 17 Pediatric Palliative Care in Canada 305

Table 17.1 Total number and leading causes of death in children, 2005 [11, 13]

Age group Cause of death Number (%)

Less than 1 year All causes 1,863 (100) Perinatal conditions 1,037 (55.7) Congenital malformations, deformations and chromosomal 447 (24.0) abnormalities Sudden infant death 112 (6.0) 1–4 years All causes 282 (100) Accidents (unintentional injuries) 74 (26.2) Congenital conditions 36 (12.8) Malignant neoplasms 28 (9.9) 5–9 years All causes 198 (100) Accidents (unintentional injuries) 64 (32.3) Malignant neoplasms 45 (22.7) Congenital conditions 13 (6.6) 10–14 years All causes 311 (100) Accidents (unintentional injuries) 95 (30.6) Malignant neoplasms 43 (13.8) Suicide (intentional self-harm) 43 (13.8) 15–19 years All causes 986 (100) Accidents (unintentional injuries) 458 (46.5) Suicide (intentional self-harm) 213 (21.6) Malignant neoplasms 61 (6.2)

17.2.4 Development of Adult Palliative Care

After meeting Dr. Cecily Saunders in England, considered the founder of the modern day hospice movement, Dr. Balfour Mount, a physician at the Montreal General Hospital, was eager to apply hospice concepts to hospitalized patients with life- limiting illness. Recognizing that the word ‘hospice’ in French is associated with care of poor or marginalized people and has a negative connotation, he coined the term ‘palliative care,’ a term more appealing to Montreal’s primarily French- speaking population. The term is commonly used across the country and, now, around the world. Dr. Mount spearheaded the founding of the ﬁrst two hospital- based palliative units in Canada in 1974. Since that time, palliative care for adults has become well established in most parts of Canada, with many inpatient hospital units, freestanding hospices, and community-based teams [15]. The Canadian Palliative Care Association was established in 1991 as a national voice for palliative care. In 2001, the name was changed to the Canadian Hospice Palliative Care Association (CHPCA) to reﬂect commonly used terminology and demonstrate that hospice care and palliative care are one and the same in Canada although the two terms may hold different meanings in other countries. CHPCA works to ensure that all Canadians have access to high quality end-of-life care [16]. The various initiatives of CHPCA are described later in this chapter as many of them have had an impact on pediatric as well as adult palliative care. 306 K. Widger et al.

17.3 Clinical Care and Services

17.3.1 Pediatric Palliative Care Programs

In 2004, Widger and colleagues conducted a study to describe the population of children who received care through one of the nine PPC programs (8 hospital-based programs and 1 children’s hospice) in existence at that time and to estimate the number of children who might benefit from but did not receive care through one of the programs [14]. The total number of children who died and received care from one of the PPC programs was compared with the total number of children who died in Canada during the same time frame from causes other than transport accidents, falls, drowning, poisoning, assault, and complications of medical and surgical care. Less than 5% of children who might benefit from PPC services actually received them. A significant barrier to reaching more children who could benefit from services was the lack of availability of a PPC program in many parts of Canada. Currently, Canada has 8 hospital-based programs and 5 free-standing children’s hospices, with 2 additional hospices under construction. One of the latter construction projects is an expansion of Canuck Place Children’s Hospice to a second location. Each PPC program, including the name of the hospital/hospice, the type of program, the city where it is located, and the year the program was established, is highlighted in Fig. 17.2.

Fig. 17.2 PPC programs in Canada 17 Pediatric Palliative Care in Canada 307

Canuck Place arose out of the collaborative efforts of a group of pediatric health care professionals and parents of children who had died from a progressive life- threatening illness. The Canuck Place program was founded on the three pillars of clinical service, education, and research. As such, evaluation and other projects provide input for ongoing development [17–25]. It has served as a resource for the development of other programs throughout Canada and the US. As the first children’s hospice, it was deemed important to its development that it be established independently from a hospital, although in close collaboration with the BC Children’s Hospital. Further information about Canuck Place development and services are provided in Fig. 17.3. Two other hospices grew out of hospital based programs (Roger’s House and Rotary Flames House) and are located next to the affiliated pediatric hospital (Children’s Hospital of Eastern Ontario and Alberta Children’s Hospital respectively). Fully integrated with the hospital, these two programs provide care in hospital, hospice, and home settings, with families choosing their preferred option. Most other hospices began from community-based programs but have linkages to local pediatric hospitals. Nationally, each hospice has between 7 and 12 beds and provides a range of services including respite, symptom management, end-of-life care, and bereavement support. Family suites or rooms large enough to accommodate family members to stay with a child admitted to the hospice are available in the hospices, along with other facilities such as gardens, dining rooms, play rooms, and lounges. Free- standing hospices receive some government funding for services they provide but rely on fundraising efforts to support the majority of their facilities and services. Canuck Place, Rotary Flames House, and Roger’s House are each associated with the local National Hockey League Team and receive some financial support through the charity arm of these teams. Hospital-based pediatric palliative care programs began in Canada in the mid- 1980s. SickKids was home to the first such program starting in 1986. At Montreal Children’s Hospital, a Clinical Nurse Specialist and Child Life Worker laid the groundwork for the PPC program that opened in 1992. At about the same time, two children’s rehabilitation hospitals, one in Ontario now called the Holland Bloorview Kids Rehabilitation Hospital and the other located in Newfoundland, the Janeway Children’s Health and Rehabilitation Centre offered palliative care programs that served to link children and their families as they left the hospital and returned to distant and rural communities. A similar program was provided to children with cancer and their families in Saskatchewan to enable provision of end-of-life care in the child’s home community [26, 27]. Additionally, excellent palliative and end-of-life care was and continues to be provided to children with cancer and other diagnoses by interested health professionals and volunteers outside of officially established programs. Most other hospital-based PPC programs began in the mid to late 1990s and consisted of a physician and nurse as the core team. Apart from the two programs that went on to develop hospices, these core teams have experienced little expansion due to lack of hospital funding for additional positions. Supportive services provided by bereavement coordinators, music therapists, child-life workers, and 308 K. Widger et al.

Fig. 17.3 Canuck Place Children’s Hospice. Canuck Place opened its doors in 1995 as the ﬁrst free-standing children’s hospice in North America. Today it is recognized as a leading program providing pediatric palliative-hospice care. Canuck Place also engages in sharing knowledge, expertise and research regionally, nationally and internationally to assist in the further development of best practices in this ﬁeld. Canuck Place provides a comprehensive continuum of care to over 400 infants, children and teens with life-threatening illnesses and their families throughout British Columbia. Program providers include physicians, nurses, counselors, a special education teacher, a social worker, a chaplain, a recreation therapist, a music therapist and many others, with both inpatient and 24-h consultation support. There are over 350 volunteers. Inpatient services in the 10-bed hospice include child and family respite (with 4 family suites), urgent admissions for pain and symptom management, and admission for end-of-life care. Canuck Place also operates the Madison Clinic at BC Children’s Hospital on a bi-weekly basis that provides an early introduction, advice and information, and out-patient follow-up care to children and families needing pediatric palliative care. Canuck Place physicians serve as the Palliative Medicine consultation team for BC Children’s Hospital. Two new initiatives are targeted towards the rising demand for services. Exploration of home-based support is starting. Based on estimates that the program currently reaches approximately 25% of the need, Canuck Place is building a second hospice in the community of Abbotsford, British Columbia, 75 km outside of Vancouver. This will be another 10 bed, 5 family suite, pediatric hospice in Abbotsford. The new hospice will deliver state-of- the-art clinical care while ensuring children and families are in an environment that is warm and welcoming

spiritual care providers are primarily funded through donations by individuals or community groups. In some programs, social workers, spiritual care providers, pharmacists, music therapists, occupational therapists and physical therapists work with the core palliative care team on a regular or as needed basis but do so without designated funding. Hospital-based PPC teams function primarily on a consultative basis providing support and advice to the primary care team in addition to the child and 17 Pediatric Palliative Care in Canada 309 family. The PPC team role can be adjusted based on the needs of the child and family as well as on the comfort level of the primary team. When a child has particularly difﬁcult pain and symptom management issues, for example, the PPC team may take on a more active role providing direct care to the child and family. Currently, three pediatric hospitals have designated palliative care beds (six beds total). At one other pediatric hospital three rooms have been created within the oncology unit and intensive care settings to provide additional and more home-like space for families. These rooms can be used for other patients if there is no patient needing end-of-life care. Although adult hospital-based palliative care units exist in many hospitals across Canada, no PPC units exist at present [28]. Despite the lack of designated beds or units, children are easily admitted to the hospital as needed for symptom management or end-of-life care. The PPC team may also serve as a bridge or liaison between hospital and home by providing education; arranging for local services; and making home visits to support the child, family, and health professionals who provide direct care in a local hospital or community setting. Generally, the primary care team, the PPC team, and the local care team work together to ensure that everyone providing care feels supported, the child and family are well supported in the setting of their choice, and there is continuity of care across settings. However, the catchment area for a pediatric hospital can be several hundred square kilometers. PPC team members may travel several hours to make a single home visit and to meet with local care providers when a child is transferred home. Telephone and video conferencing can be used to support both families and health professionals, but in the high touch world of palliative care, real physical presence may be required [29, 30]. In some programs operating budgets cover travel for home visits, while other programs rely on donated funds for travel costs. Staff time and video conferencing costs are covered through hospital operating budgets. Video conferencing is used at least once or twice a month by most programs, often to prepare for discharge from the tertiary centre.

17.3.2 Bereavement Services

Despite research indicating that parents consistently identify a need for bereavement services as part of the continuum of care [31], only four hospital-based PPC programs provide bereavement follow-up to all families who have experienced the death of a child at the hospital. The remaining PPC programs provide bereavement follow-up to families who received care through the program prior to the child’s death. In hospitals without a hospital-wide bereavement program, there may be some follow-up provided to families who were cared for in speciﬁc settings, such as intensive care units or oncology units, if those units have developed their own program for bereavement follow-up. A great deal of variation exists among programs in terms of the types of follow-up provided, but services may include a series of scheduled contacts through phone calls or letters, grief support groups (for siblings or parents), hospital wide memorial services, and/or meetings with health professionals to discuss the child’s death or autopsy results [17, 32–36]. 310 K. Widger et al.

17.3.3 Clinical Care Challenges

Members of some PPC programs report using creative means to support children and families and the health professionals who care for them without receiving a formal consult to the team. This approach may take the form of having team members with multiple roles, e.g., they may work part-time for the PPC program and part time in another area such as home care or in an intensive care unit. When a child may beneﬁt from a palliative care approach or services, the child may receive these services through the home care nurse or ward physician without a formal consult being made to the entire PPC team. There also may be ‘informal’ consults made to a PPC team when either some health professionals or family members do not want to have a formal consult with the team. The PPC team may still provide advice or support to health professionals on how to treat symptoms or access services without becoming directly involved with the whole team or family. While these creative or informal methods may achieve the goal of providing good palliative care to a family, they may lead to a discrepancy issue when policy and decision makers base funding decisions on the number of formal consults that are made to a program. An additional challenge arises with the lack of interdisciplinary variability within the core PPC teams. Although by deﬁnition hospice palliative care is delivered by a team of professionals, the involvement of professions such as social work and spiritual care vary widely throughout the country. The Canadian Hospice Palliative Care Association standards also call for constant access to care. This standard presents a challenge to many of the hospital-based programs in Canada. As many of the programs consist of only one or two people, it is not feasible for them to be on call 24 h a day on an ongoing basis. However, highly committed members of several programs do provide such service, or have done so in the past, often at a personal cost to themselves. Education of other health professionals in the principles and practices of palliative care is often a major initial and ongoing focus of PPC team members as they strive to educate others who can contribute to providing full access to care.

17.4 Educational Initiatives

17.4.1 Community Education

Education of health professionals and volunteers who provide direct care to children with life-limiting illness is integral to the clinical role of health professionals in PPC programs. Team members may teach pediatric care providers in hospital or community settings about the principles of palliative care. They may also teach adult palliative care providers in the community about differences that are important when caring for children rather than adults. Education may be focused on the needs of a particular child and family who is returning home after being cared for by the PPC team or education may take on a broader capacity-building approach to improve 17 Pediatric Palliative Care in Canada 311 skills in palliative and end-of-life care for all health professionals. These individuals can then assist children who could benefit from that approach when a formal consult to the team is not required or is not possible due to distance. Because the palliative care teams generally work as consultants, capacity-building is crucial to ensuring that children and their families receive the highest quality care, regardless of who provides direct care. The form of capacity building varies across the country, but most hospital-based PPC program members travel into the community to conduct day-long or multi-day intensive education sessions on various aspects of PPC. As indicated in the description of the context of care in Canada, some of the tertiary pediatric care hospitals have sizable catchment areas. In rural areas, health professionals may only see only one or two children with a life- limiting or life-threatening illness each year so this education is important. Moreover, education and outreach to smaller communities create linkages that foster future consultations, team work, and support for local teams who find themselves caring for a child with a life-limiting illness. One example at a provincial level is the PPC program at the IWK Health Centre in Nova Scotia which recently received the Rotman Award for Pediatric Home Care Innovation. This grant is being used to develop and deliver both on- site and webinar education sessions throughout Atlantic Canada (Nova Scotia, Prince Edward Island, New Brunswick, and Newfoundland Labrador). The goal of these sessions is to enhance the confidence and skills of local care providers in the areas of pain and symptom assessment and management, communication with children, difficult conversations, staff distress, bereavement, and ethical issues. The program will also include webinar sessions offered across Canada in the near future. Nationally, as a second example, the Hospital for Sick Children coordinates PPC rounds on a monthly basis via telehealth. Topic areas are varied and may include research or discussion of clinical issues. Participating sites from across Canada may also choose to host a session to provide broader exposure for an event that is happening locally. There are similar programs in other parts of the country that provide education to the various sectors that require it.

17.4.2 Professional Education and Competencies

The introduction of professionals to PPC, whether recent graduates or more experienced clinicians, is vital to renewing and expanding PPC in Canada. Education in hospice palliative care issues is becoming more common for all health professionals as part of their basic training; however, the amount of content speciﬁc to pediatrics varies across the country [37]. Some professional groups have undertaken additional work to identify competencies or create additional designations to indicate specialization in hospice palliative care. Most of this work has focused on providing care to adult patients; however, strong representation from pediatric practitioners ensures the needs and issues related to pediatric patients are included as well. 312 K. Widger et al.

17.4.2.1 Nursing A nursing interest group in palliative care was established under the auspices of CHPCA in 1993. This group created the first edition of the Canadian Hospice Palliative Care Nursing Standards in 2002 [38]. The standards were based on a research project by two Canadian nurses to define the dimensions of supportive care nursing [39–41]. The standards were revised in 2009, with the Supportive Care Model remaining a key resource for nurses in Canada but the standards were also aligned with the CHPCA Model to Guide Hospice Palliative Care: Based on National Principles and Norms of Practice [42]. The Supportive Care Model has also recently been proposed as a resource to guide provision of PPC [31]. Nursing competencies were developed from the nursing standards to form the basis of a national certification examination. Currently, there are nearly 1,300 Certified Hospice Palliative Care Nurses in Canada [43]. The oversight committee for development and administration of the certification examination is structured to include at least one PPC nurse on the committee. Between 6 and 20% of the examination questions focus on pediatric patients; in addition to items on the needs of children experiencing the death of a family member [44].

17.4.2.2 Social Work Currently, social workers working in PPC learn their skills on the job: there are no national opportunities to educate palliative social workers in Canada. Many schools of social work have curricula that address palliative care, but focus mostly on adults and are dependent on having a knowledgeable faculty member. Recent work, however, is establishing competencies for social work in palliative care [45]. Health Canada, the national health agency, brought together a group of social workers to discuss educational initiatives and begin a process of competency development for social work practice in hospice palliative care [46]. The competencies are applicable to both adult and pediatric palliative care [47]. Currently, the competencies are being developed into tools for adoption in schools of social work in Canada. The aim is to make palliative social work education more widely available throughout the country and at all levels of social work training and professional development.

17.4.2.3 Medicine Education for physicians in PPC occurs at many levels in academic settings across the country. There is, however, no unified curriculum or educational program at this time. Educational opportunities exist at sites that have PPC programs with physicians as part of the program, whether in a free-standing hospice or hospital-based team. Physicians in these programs teach at the medical undergraduate and graduate (residency) levels. Residents can undertake elective or required rotations through PPC programs. Though there is not yet a unified curriculum, curriculum guidelines developed 17 Pediatric Palliative Care in Canada 313 through programs such as the Educating Future Physicians in Palliative and End- of-Life Care (EFPPEC) Project [48] and the American Academy of Hospice and Palliative Medicine UNIPAC curriculum [49] are widely used. In addition, post- residency fellowship training posts have been funded at different centres, but these have been funding-dependent and are not consistently available. Post-graduate certification through the Canadian College of Family Physicians currently exists, and work is underway to develop a post-residency Sub-Specialty through the Royal College of Physicians and Surgeons. These initiatives will create more sustainable training programs in the near future.

17.4.3 National and International Conferences

CHPCA sponsors a yearly 4-day national conference, held in cities that alternate between the western and eastern parts of Canada. The conference program always includes a large number of posters and presentations pertaining to pediatrics. Every 2 years since 1976, the International Congress on Palliative Care is held in Montreal and typically draws nearly 1,400 attendees from 65 countries [50]. Pediatric content has increased steadily. On the ﬁrst 2 days of the 2010 Congress, a special workshop for PPC was held where the ﬁrst day focused on clinical issues and the second on research. The remainder of the conference included at least one pediatric topic in each concurrent session, as well as over 40 poster presentations related to pediatrics. These conferences present regular opportunities for the Canadian PPC community to come together to learn from each other in the sharing of both new initiatives and successes and challenges.

17.5 Research Initiatives

17.5.1 Canadian Institutes for Health Research

Research related to PPC has been conducted in many different parts of Canada for a number of years. At the start of this century, the Canadian Institutes for Health Research (CIHR), the national funding agency for health-related research, recognized the need for targeted funding for palliative care research in Canada. In 2003, a call was posted for research proposals for ‘New Emerging Teams’ and pilot projects related to palliative care. Of the 20 pilot projects funded, one focused on pediatric issues: a surveillance study to describe the population of children receiving PPC [14]. Of the nine team grants funded, one focused exclusively on PPC and two other team grants included a small component of pediatrics. The pediatric team grant was called Transitions in Pediatric Palliative and End-of-Life Care (PedPalNET) [51]. The team grants were designed to support infrastructure for research and fund the next generation of researchers through student support at all levels. 314 K. Widger et al.

Targeted funding for additional palliative care research teams has not been renewed by the current government; however, teams can apply to CIHR for research grants through regular funding initiatives. To facilitate optimal review of palliative care grants, CIHR has established a Palliative and End-of-Life Care Peer Review Committee. Researchers submitting grant proposals to CIHR pertaining to palliative care, including pediatrics, can request that the proposal be directed to this review committee or, depending on the topic, to another applicable one such as the Children’s and Youth’s Health Committee. Since only one review committee can be selected, it can be a challenge to decide whether to send a proposal to the palliative care committee which may include primarily adult-based researchers or to the children’s committee which may include pediatric researchers with little knowledge of palliative care issues.

17.5.2 PedPalNET

PedPalNET, funded initially by a CIHR New Emerging Team grant from 2004 to 2010, is a multi-disciplinary, multi-site team of researchers in PPC. During these years, the team secured $3.6 million in additional grants to fund a number of studies and knowledge translation activities. Unlike funding in some countries, research grants in Canada do not generally cover investigators’ salaries. The team completed or began 17 different research projects, published 13 manuscripts, and contributed 33 presentations and 32 posters at regional, national, and international conferences. Several projects are still in progress and a number of other manuscripts are in review or in preparation. Through the initial grant, training in PPC research was provided to 8 master’s students, 11 doctoral students, and 1 clinical research fellow. One of the ﬁrst studies conducted by PedPalNet was a Delphi process to identify research priorities within PPC [52]. Clinicians and researchers from across Canada were surveyed and four research priorities were identiﬁed:

1. What matters most for patients and parents receiving pediatric palliative care? 2. What are the bereavement needs of families in pediatric palliative care? 3. What are the best practice standards in pain and symptom management? 4. What are effective strategies to alleviate suffering at the end of life?

These priority areas have assisted in guiding the development of subsequent research proposals and projects. Please see Fig. 17.4 for additional information about PedPalNET activities.

17.5.3 TRAC-PG

The Team for Research with Adolescents and Children in Palliation and Grief (TRAC-PG) is based at the Hospital for Sick Children in Toronto, but its members include community and hospital-based clinicians, scientists, and family members. 17 Pediatric Palliative Care in Canada 315

The New Emerging Team: Transitions in Pediatric Palliative and End of Life Care (PedPalNET) consists of a multidisciplinary core team of 5 researchers across Canada and a network of 48 collaborators and 14 partner organizations in Canada, the US, and the UK that have developed a sustainable research program focused on creating knowledge and evidence to optimize provision of care for children with life-limiting conditions. PedPalNET engages in child-centered research in three overlapping thematic research areas: Biomedical & Clinical Indicators, Health Services, and Families. A mixture of qualitative and quantitative approaches is used to examine important transitions that occur along the illness trajectory for children and families with life-threatening diseases. PedPalNET has examined physiological aspects of palliative care, such as symptom management and biological signals of pain. Research on biological markers of pain, for example, will be especially helpful in situations where children are non-verbal, either because of age or condition. In collaborative effort with Canuck Place Children’s Hospice, PedPalNET has studied the mortality trends and patterns in children, youth and young adults in British Columbia to understand it’s implications for PPC and parameters for health service planning. The team has also explored the psychosocial aspects of palliative care for families, such as bereavement and transitions to and within hospice care, and are currently conducting studies that ask parents about their bio-psycho-social-spiritual experiences in caregiving and studies families over time when a child has a progressive, neurological, metabolic, or chromosomal life-threatening condition.

PedPalNET has developed evidence that can be used to improve the experiences of children, families, caregivers, and health care professionals from diagnosis through bereavement by working with the children, their families, and the community of caregivers, healthcare providers, and healthcare settings. New knowledge obtained from this collaborative effort may lead to identifying interventions that will be helpful to families and work towards strengthening positive and mitigating negative outcomes of living with and caring for a child with a life threatening condition, from diagnosis through bereavement.

Fig. 17.4 PedPalNET activities

TRAC-PG advocates for excellence in pediatric palliative, end-of-life, and bereavement care through interprofessional and innovative research. To date, this group has focused primarily on promoting partnerships among team members through sharing updates on existing research projects being conducted by various members and on disseminating knowledge through an annual research day. The team was recently funded to begin its ﬁrst study, conceived and designed by team members, on experiences of dying children’s siblings.

17.5.4 International Francophone Research Group

There is a research network of French-speaking pediatric palliative care clinicians and researchers that includes individuals from Québec and France. Further information is available at: www.pediatriepalliative.org.

17.5.5 Research Challenges

Conduct of PPC research in Canada shares many of the same challenges faced in other countries, including the identification of children or families for recruitment and overcoming numerous myths about ethical issues related to conducting research in this area [53–55]. Small numbers of children overall and the relatively small centres where children are cared for means that multicentre research is needed in order 316 K. Widger et al. to recruit sufficient sample sizes in Canada. The ethics approval process in a multicentre study can add at least 6 months to the length of the study, which must be factored into proposals and study timelines [53]. It is often the same centres participating in multiple studies and already overburdened local clinicians are needed as collaborators to assist with obtaining ethics approvals and with recruitment. As there are two official languages in Canada, English and French, all study materials must be available in both languages in order to be inclusive. The cost of translation and hiring bilingual Research Assistants can add significant costs to a study budget.

17.6 Advocacy and Policy

17.6.1 Canadian Hospice Palliative Care Association

The mandate of CHPCA is to support research, promote education and training, improve public awareness, and advocate for increased programs and services [56]. The association publishes a directory of palliative services and has an annual award of excellence, among other activities. One of the major undertakings of the CHPCA is public awareness and fundraising, such as the Hike for Hospice and the Living Lessons campaigns. Those who work in the association are proud to have had their advocacy associated with the appointment of a Minister with Special Responsibility for Palliative Care within the national government. In addition, CHPCA administered the development and publication of ‘A Model to Guide Hospice Palliative Care: Based on the National Principles and Norms of Practice.’ [42] The model and norms were developed over 9 years through consensus building process. This process is detailed within the norms document. Norms are statements of usual practice. As opposed to minimum standards of care, norms set a higher level of expectation. Organizations which use the model can develop their own minimum standards within each norm that ﬁts with the realities of care provision within the organization. The model describes patient/family centred hospice palliative care, guides the development and growth of hospice palliative care programs in Canada, provides a framework for evaluation of outcomes of care, and is a foundation for policy development. CHPCA has special interest groups for all of the professions working in hospice/ palliative care, including volunteers, and is also a voice for pediatric issues through its support of the pediatric special interest group, the Canadian Network of Palliative Care for Children (CNPCC).

17.6.2 Canadian Network of Palliative Care for Children

Clinical staff members in the various PPC programs advocate at both local and provincial levels for services for individual pediatric patients and their families. As well, they advocate for increased funding, services, and policies to ensure the provision of optimal PPC for all children and families who need it. In 1999, members of PPC programs based in Vancouver, Halifax, Toronto, and Montreal began 17 Pediatric Palliative Care in Canada 317 meeting by teleconference, as well as at national conferences, to learn from each other and to work together on issues that had a national impact. In 2001, the group officially became a special interest group of CHPCA and, thus, benefited from CHPCA administrative support. Subsequently, the interest group became the Canadian Network of Palliative Care for Children (CNPCC) and established its first terms of reference in 2003. The purpose of CNPCC is to:

• develop, coordinate, and maintain a Canadian network for pediatric hospice palliative care. • collaborate on national and international activities and initiatives in the ﬁeld of pediatric hospice palliative care and to seek opportunities for partnerships. • assume a role of leadership in pediatric hospice palliative care and to advocate for the needs of children with life-threatening illness and their families.

The CNPCC executive currently has 10 members with representation from many parts of Canada and several different professions. The executive meets regularly by teleconference and facilitates a larger meeting with all members of the network at the annual national conference. CNPCC maintains a website to facilitate sharing of information about educational or research initiatives, clinical policies, and employment or training opportunities. There is also a list serve and a quarterly newsletter. Within CNPCC, a subgroup formed in 2009 to focus more specifically on issues related to the development of freestanding pediatric hospices in Canada. The Canadian Network of Pediatric Hospices (CNPH) is working to develop guidelines for establishing pediatric hospices. Their goals are to ensure consistency in descriptions of pediatric hospice care, educate health professionals and the public about pediatric hospices, and advocate for pediatric hospices. CNPCC and CHPCA worked together to develop the Pediatric Hospice Palliative Care Guiding Principles and Norms of Practice [57]. This document was based on the adult version of principles and norms, but includes issues unique to providing care to children and families regardless of the setting in which that care occurs. Efforts at the federal level to create a national strategy for palliative and end- of-life care within the health care system have been ongoing. Several reports have been put forth primarily through the efforts of the Minister with Special Responsibility for Palliative Care [58]. One important achievement is establishment of the Compassionate Care Benefit through Employment Insurance which entitles a person to 6 weeks of paid leave to provide care to a family member who has a significant risk of dying within 6 months.

17.7 Conclusion

Key events in the development of palliative care in Canada are summarized in Fig. 17.5. Additionally, a list of websites is provided in Fig. 17.6 to assist in ﬁnd- ing further information about various Canadian programs and initiatives. Pediatric 318 K. Widger et al.

1974 – First hospital-based adult palliative care units open in Montreal and Winnipeg 1976 – First International Congress on Palliative Care held in Montreal 1986 – First hospital-based pediatric palliative care program established at SickKids 1991 – Canadian Palliative Care Association established (name changed in 2001 to Canadian Hospice Palliative Care Association) 1995 – Canuck Place Children’s Hospice opens 2001 – CNPCC established 2002 – Model to Guide Hospice Palliative Care: Based on National Principles and Norms of Practice published 2004 – Hospice Palliative Care Nursing Certification Examination administered 2004 – Compassionate Care Benefit established 2004 – PedPalNet funded by CIHR for 5 years 2006 – Pediatric Hospice Palliative Care Guiding Principles and Norms of Practice published 2009 – CNPH established

Fig. 17.5 Timeline of key events in Canadian palliative care development

Children’s Hospice Programs: Canuck Place Children’s Hospice http://www.canuckplace.org/ Darling Home for Kids http://www.darlinghomeforkids.ca/ Le Phare/The Lighthouse http://www.phare-lighthouse.com/ Philip Aziz Centre for Hospice Care http://www.philipazizcentre.ca/ Rogers House http://www.rogershouse.ca/en/ Rotary Flames House http://www.childrenhospital.ab.ca/site/PageNavigator/hospital/rotaryflameshouse

Research Groups: New Emerging Team: Transitions in Pediatric Palliative and End-of-Life Care http://www.pallpedsnet.ca/index.htm Team for Research with Adolescents and Children in Palliation and Grief http://www.tracpg.ca/ International Francophone Research Group www.pediatriepalliative.org

Advocacy Groups: Canadian Network of Palliative Care for Children http://www.cnpcc.ca/ Canadian Network of Pediatric Hospices http://www.cnph.ca/ Canadian Hospice Palliative Care Association http://www.chpca.net/

Documents: Pediatric Hospice Palliative Care Guiding Principles and Norms of Practice http://www.chpca.net/pediatric_norms_of_practice A Model to Guide Hospice Palliative Care: Based on the National Principles and Norms of Practice http://chpca.net/model_to_guide_hpc Blueprint for Action 2010 to 2020 http://www.qelccc.ca/uploads/files/information_and_resources/ENG_progress_report_2010.pdf

Fig. 17.6 Canadian websites palliative care is at an exciting stage in its evolution within Canada. Interest in providing clinical care in PPC is growing rapidly and research efforts have expanded exponentially as clinicians and researchers work together to advance evidence-based PPC for children and their families. Despite Canada being geographically vast and sparsely populated with a political and language context that guarantees variations 17 Pediatric Palliative Care in Canada 319 in the health care and PPC delivery, a unity and strong sense of community is, in part, made possible by our relatively small population and made necessary by the distance between us. We take pride in Canada’s leadership role in PPC and we look forward to further extending our partnerships around the world.

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42. Ferris FD, Balfour HM, Bowen K, Farley J, Hardwick M, Lamontagne C, Lundy M, Syme A, West P (2002) A model to guide hospice palliative care. Canadian Hospice Palliative Care Association, Ottawa, ON 43. Canadian Nurses Association (2010) Number of valid CNA certifications by specialty and province/territory of registration, 2006 to July 2010. http://www.canadian-nurse.com/images/ stories/sept2010_cert_numbers.pdf. Accessed 03 Feb 2011 44. Canadian Hospice Palliative Care Association (2008) Hospital palliative care nursing certification examination – list of assumptions and competencies. http://www.chpca.net/ uploads/files/english/resource_doc_library/Canadian_HPC_Nursing_Assumptions_and_ Competencies.pdf. Accessed 20 Dec 2010 45. Cadell S, Bosma H (2011) Palliative social work in Canada. In: Altilio T, Otis-Green S (eds) Oxford textbook of palliative social work, 1st edn. Oxford University Press, Oxford, pp 531–535 46. Bosma H, Johnston M, Cadell S, Wainwright W, Abernethy N, Feron A, Kelley ML, Nelson F (2010) Creating social work competencies for practice in hospice palliative care. Palliat Med 24:79–87 47. Cadell S, Johnston M, Bosma H, Wainright W (2010) An overview of contemporary social work practice in palliative care. Progr Palliat Care 18:205 48. Educating Future Physicians in Palliative and End-of-Life Care Project (2004) Welcome to the EFPPEC website. http://www.afmc.ca/efppec/pages/main.html. Accessed 03 Feb 2011 49. Storey P, Knight C (2010) Hospice/palliative care training for physicians: the UNIPAC book series. http://www.liebertpub.com/products/product.aspx?pid=119. Accessed 03 Feb 2011 50. O’Donoughue & Associates Event Management (2010) 18th international Congress on palliative care: by the numbers. http://www.palliativecare.ca/en/results/numbers.html. Accessed 03 Feb 2011 51. Straatman L, Cadell S, Davies B, Siden H, Steele R, The Centre for Community Child Health Research (2008) Paediatric palliative care research in Canada: development and progress of a new emerging team. Paediatr Child Health 13:591–594 52. Steele R, Bosma H, Johnston MF, Cadell S, Davies B, Siden H, Straatman L (2008) Research priorities in pediatric palliative care: a Delphi study. J Palliat Care 24:229–239 53. Cadell S, Ho G, Jacques L, Wilson K, Davies B, Steele R (2009) Considerations for ethics in multisite research in paediatric palliative care. Palliat Med 23:274–275 54. Davies B, Widger K, Steele R, Cadell S, Siden H, Straatman L (2011) Research considerations. In: Wolfe J, Hinds P, Sourkes B (eds) Textbook of interdisciplinary pediatric palliative care, 1st edn. Elsevier Inc., Philadelphia, pp 96–103 55. Davies B, Steele R (1996) Challenges in identifying children for palliative care. J Palliat Care 12:5–8 56. Canadian Hospice Palliative Care Association (2010) The Canadian Hospice Palliative Care Association: a history. http://www.chpca.net/History. Accessed 10 Dec 2010 57. Canadian Hospice Palliative Care Association (2006) Pediatric hospice palliative care guiding principles and norms of practice (2006). http://www.chpca.net/pediatric_norms_of_practice. Accessed 22 Dec 2010 58. Health Canada (2009) Chronology of key national palliative and end-of-life care developments in Canada. http://www.hc-sc.gc.ca/hcs-sss/palliat/support-soutien/chronolog-eng.php. Accessed 23 Dec 2010 Chapter 18 Pediatric Palliative Care in Costa Rica

Lisbeth Quesada-Tristán and Daniel Masís-Quesada

Abstract This chapter describes the development of pediatric palliative care in Costa Rica over a 20-year period. Costa Ricans are proud of their universal Social Security system that allows close to 100% of its citizens, both working and non- working, access to health care services. However, as recently as 20 years ago, Costa Rica lacked a national pediatric palliative care policy. In the early 1990s, three landmark events occurred to advance pediatric palliative care nationally. First, the Pediatric Palliative Care and Pain Control Clinic (PPCPCC) was established at the Children’s National Hospital (CNH) in San José in 1990. Second, national palliative care legislation was passed in 1992 recognizing that all Costa Ricans have the right to die with dignity and without pain, leading to the establishment of financial benefits for caregivers of terminally ill patients. Third, in 1992 the nonprofit organization, “Fundación Pro Unidad de Cuidados Paliativos” (the Foundation for the Palliative Care Unit), was established. The Foundation was able to support the expansion of the PPCPCC by providing additional resources to open 2 day centers, hire additional professional staff, and to buy medications, transportation, and medical equipment. In addition to providing inpatient hospital services, the PPCPCC now provides home visits and operates a day center in San José and another in the south of the country. Additionally, the PPCPCC provides grief support groups, a bank of medical equipment for free loan, daily provision of food to the poorest families, and purchase of medicines that Social Security does not have. Although there have been significant advances, challenges remain. Nationally, children in underserved areas would benefit from the development of day centers in the northern and central regions. Furthermore, it is difficult to identify those children with life-limiting illnesses who might benefit from the program in the absence of national incidence statistics.

Keywords Costa Rica · pediatric palliative care · Pediatric Palliative Care and Pain Control Clinic · Foundation for the Palliative Care Unit · Program development · Life-limiting illnesses · Social Security · Day center

L. Quesada-Tristán (B) Pediatric Palliative Care and Pain Control Clinic, Children’s National Hospital, San Josè, Costa Rica e-mail: [email protected]

C. Knapp et al. (eds.), Pediatric Palliative Care: Global Perspectives, 323 DOI 10.1007/978-94-007-2570-6_18, C Springer Science+Business Media B.V. 2012 324 L. Quesada-Tristán and D. Masís-Quesada

18.1 Introduction

Costa Rica is a tiny country located in Central America that forms a long and narrow bridge between North and South America. The country is most frequently known for the historic event that occurred on December 1, 1948, where the army was con- stitutionally abolished. In addition, Costa Rica has an environmental policy for the protection of nature that is very well known and appreciated around the world. Costa Rica has a national park system and is one of the few countries that heavily relies on so many national parks, which are protected across the countries’ 51,100 km2 landmass. Among the countries of Latin America, Costa Rica ranks first in the classification of tourism competitiveness index, and 42nd world-wide. Costa Rica’s human development index is the sixth best in Latin America [1]. Since independence from Spain in 1821, Costa Rica has invested systematically as a country in education and health. Costa Rica has a Social Security system, very similar to that of Canada or England, called the Costa Rican Social Security Fund. The health care system is a system based on solidarity that is financed by the State’s contribution, the contribution of the employer and the contribution of the worker. In the early 1970s Social Security was universalized, resulting in coverage for the entire population including working and non-working citizens. Costa Ricans are proud of their Social Security system and its impact on health outcomes. In 2008, Costa Ricans’ had an average life expectancy of 79 years. During a 10-year period from 1999 to 2009, the infant mortality rate, neonatal mortality rate, and the postna- tal mortality rate all decreased. Infant mortality decreased from 11.8 per thousand in 1999 to 8.84 per thousand in 2009, a decrease in the infant mortality rate of 2.96 deaths/1,000 live births [1]. The neonatal mortality rate decreased during the same 10-year period from 8.09 to 6.44 per thousand and the postneonatal mortality rate decreased from 3.69 to 2.40 per thousand. In 2009, maternal mortality registered a rate of 2.67 deaths/10,000 women during pregnancy and childbirth. Costa Rica has a population of 4,509,392 of which almost one million are foreigners. A good proportion of foreigners are of Nicaraguan nationality, given the countries’ proximity and history of war, famine, and unemployment in the last 40 years.

18.2 Pediatric Palliative Care Beginnings

In 1987 Dr. Lisbeth Quesada-Tristán won a Fulbright scholarship from the United States of America to train at St. Lukes-Roosevelt Hospital Center in New York City (Fig. 18.1). Upon her return Dr. Quesada found a great number of obstacles to providing palliative care. The social security system had no palliative care policy or approach for either the adult or pediatric populations. As in other countries, myths surrounding the use of morphine to control cancer pain were prevalent. Tenacious work was required to raise awareness of palliative care, which is one reason for the initiation of courses and workshops on palliative care taught by Dr. Quesada at the 18 Pediatric Palliative Care in Costa Rica 325

Fig. 18.1 Dr. Lisbeth Quesada-Tristán

Teaching and Research Center of the Costa Rican Social Security (CENDEISS). In 1991 the first Medical-Scientific Conference on Palliative Care for all types of health professionals was held, with an attendance record for that time of just over 200 people who came from all over the country. The seed for palliative care was then sown. The Pediatric Palliative Care and Pain Control Clinic (PPCPCC) was founded on October 1, 1990 in San José at the Children’s National Hospital, the only pediatric hospital in the country. On October 22nd of that same year a grief support group was established for parents who have lost children. Both services have been evolving ever since. In 2010, we celebrated 20 years of uninterrupted work, 24 h a day, and 365 days a year. The PPCPCC was the first palliative care unit in Costa Rica, Central America and Latin America for the care of children and adolescents needing pediatric palliative care (PPC). Currently the PPCPCC is the only group providing this care in Costa Rica. Sometimes the PPCPCC serves Costa Rican children who have been diagnosed and treated in the United States but have returned to die in Costa Rica. This requires the PPCPCC to coordinate with outside PPC teams and provide services. Similarly, some patients from Nicaragua have been treated who wish to go home to die in their country. Arrangements are made by the PPCPCC team and medicines are supplied from a distance, including morphine for pain control. The PPCPCC at the Children’s National Hospital is currently staffed by five specialist doctors in palliative care, including three with a specialty in pediatric palliative care, two nurses with interdisciplinary expertise in palliative care, three psychologists, all with expertise in palliative care, one physiotherapist, and one nutritionist with career expertise in palliative care (Fig. 18.2). There is also a group of volunteers. 326 L. Quesada-Tristán and D. Masís-Quesada

Fig. 18.2 The pediatric palliative care team, Children’s National Hospital, San José. (Back, from left to right) Dr. Luis Madrigal, Secretary Rosibel Solís, Dr. Hazel Gutiérrez, Lic. Nurse Shantel Miller, Dr. Marta Meza, Dr. Juan Carlos Irola, Lic. Nutritionist Gabriela Masís, Lic. Psychologist Sebastián Morera. (Sitting, from left to right) Lic. Psychologist Ligia Obando, Psychologist Mirna Calderón, Dr. Lisbeth Quesada-Tristán, Lic. Nurse Zaida Delgado, Lic. Physiotherapist Hazel Alpízar

18.3 Children with Life-Limiting Illnesses

Currently the government has no statistics for children with life-limiting conditions; however, based on our own estimates, the PPCPCC barely covers approximately one-third of the population that would beneﬁt from PPC. The biggest number of active patients that the PPCPCC has given follow-up to over a period of 6 months was 800 patients. Our population has been identiﬁed as those children and young people with life-limiting conditions throughout the national territory based on the following definition: “Patients with life-limited conditions are those patients with no reasonable chance of cure and a high probability of dying. This condition causes progressive deterioration and makes these patients increase their dependence on parents and caregivers”[2]. Children with life-limiting illnesses can further be divided into four groups, as described in Table 18.1. 18 Pediatric Palliative Care in Costa Rica 327

Table 18.1 Groupings of children with life-limiting illnesses

Group Examples

Group 1 Patients with life-threatening diseases where curative Children and treatment can be successful but with a chance of adolescents with failure. Palliative care may be necessary during cancer and periods of active treatment regardless of prognosis, irreversible failure of and when treatments fail and the prognosis is poor. vital organs like heart, Children and adolescents in remission after liver and kidney. successful curative treatment should not be included in this group. Group 2 Patients with prolonged and intensive treatment aimed Cystic Fibrosis and at prolonging life and allowing life to be as normal as Muscular Dystrophy possible, participating in activities of childhood, but Group. early death is possible. Group 3 Patients with progressive disease without curative Batten disease, treatment options, treatment is only palliative and mucopolysacchari- may extend for many years. doses, and hydrocephalus. Group 4 Patients with severe non-progressive neurological Infantile cerebral palsy problems that can cause weakness and make them and brain and spinal susceptible to complications and unpredictable injuries. deterioration.

Source: PPCPCC, Children’s National Hospital

18.4 Barriers to Identifying and Referring Children to PPC

Barriers exist to identifying and referring children with life-limiting conditions to a palliative care program. These are mainly related to:

• Absence of national statistics for children with life-limiting illnesses, and the geographical areas where the greatest concentrations of this population reside are unknown. • Nationally, there is lack of knowledge among different healthcare professionals about pediatric palliative care. • There is a tendency among health care professionals to identify pediatric palliative care only for patients whose lives are too short or who face the terminal phase of the disease and not for those children with life-limiting conditions. • Many of these children have relatively stable conditions, attend special schools, and are served by the network of health services in pediatrics, general hospitals, and clinics. • There are limitations in available resources and a lack of a speciﬁc budget for pediatric palliative care for all children and adolescents in Costa Rica.

To advance pediatric palliative care would require, of course, national policies to care for all children in these circumstances and additional resources for comprehensive care. 328 L. Quesada-Tristán and D. Masís-Quesada

Table 18.2 Frequency of life-limiting diagnoses at the Statistics by diagnosis PPCPCC, Children’s National PPCPCC, Children’s National Hospital Hospital Nonprogressive chronic neurological diseases 37.2% Chromosomal alterations and metabolic diseases 31.4% Congenital malformations and other origins of SNC 20.0% pathology Chronic and congenital heart disease 4.0% Progressive degenerative neurological diseases 2.0% Tumors of the CNS, head and neck 1.5% Chronic and congenital lung diseases 1.5% Liver tumors 1.2% Chronic and congenital kidney diseases 0.6% Leukemias, lymphomas, and other 0.3% lymphoproliferative diseases Bone and soft tissue tumors and other tumors 0.3%

Source: PPCPCC, Children’s National Hospital

18.5 Common Life-Limiting Diagnoses

The most common life-limiting diagnoses seen at the PPCPCC at the Children’s National Hospital are listed in Table 18.2.

18.6 Location and Type of Pediatric Palliative Care Services

The PPCPCC has been functioning since October 1, 1990 at the Children’s National Hospital in San José (Fig. 18.3). Colleagues of the hospital refer their patients to our service through an epicrisis, which is a brief summary of the case. The response time, once the patient is in the hospital to be evaluated, is less than an hour upon referral. Inpatients are visited everyday by the staff. The pediatric palliative care program is organized into four teams that are each responsible for one area of the country and the number of patients varies according to the region. Through this organization we are able to cover the whole country (Tables 18.3 and 18.4). The four teams are as follows:

• The ﬁrst team stays in the hospital, • The second team serves the day center El Albergue (Shelter/Refuge) San Gabriel with scheduled visits, • The third team makes scheduled home visits, and • The fourth team, located in the south, serves the second pediatric palliative care day center, El Albergue (Shelter/Refuge) Dr. Gastón Acosta-Rúa. The fourth team also makes home visits, and coordinates the management and treatment of the patient’s care with the regional Hospital’s pediatric department if admission is needed. 18 Pediatric Palliative Care in Costa Rica 329

Fig. 18.3 Children’s National Hospital, San José, Costa Rica

The PPCPCC is a service provided by the Children’s National Hospital in collaboration with the Foundation for the Palliative Care Unit, which is in charge of providing comprehensive care (biological, physiological, sociological, spiritual) towards improving the health-related quality of life for children and adolescents with life-limiting conditions. 330 L. Quesada-Tristán and D. Masís-Quesada

Table 18.3 Year activities for PPCPPC, CNH, San Gabriel and Dr. Acosta-Rúa Day Centers

Activity 2007 2008 2009 2010

Total hospital visits, inpatient 802 1075 1117 1615 Total inter-consultations, hospital 23 102 95 136 Total inter-consultations, rejected 15 15 7 5 Total prescriptions made in hospital, 6758 9244 9867 11750 home visits, San Gabriel Day Center Total appointments hospitala 228 318 564 802 Only CNH

aCorresponds to coordination with other institutions, meetings with other hospital services, patients arriving at hospital without notifying and obtaining consultation for symptoms, mothers who come to consult for various reasons, patients who are appointed to the hospital for control Source: Statistics, PPCPCC, Children’s National Hospital

Table 18.4 Annual patient caseloads at the day centers, Visits per year of patients, San Gabriel and Dr. Gastón San Gabriel and Dr. Gastón Acosta-Rúa Day Centers Acosta-Rúa 2007 2008 2009 2010 Total patients 1210 1342 1405 1633

Source: Statistics, PPCPCC, Children’s National Hospital

Children receive free care during the different stages of intervention that professionals deem appropriate, including:

• Home visits, which are carried out according to patient’s needs and availability of the team. • Intra-hospital assessment. When the child is admitted to the hospital the parents need to report to us about the admission. • San Gabriel Day Center, which has an internal regulation that is delivered at the same time that the family and child use the service.

18.6.1 Hospital Care

Through hospital care we aim to [2]:

1. Capture most of the patients in the PPCPCC, evaluating the referrals sent from the different hospitals. 2. Follow up on patients in the PPCPCC who were admitted for treatment or for acute care. 3. Coordinate patient care by interacting with the treating services and our team. 18 Pediatric Palliative Care in Costa Rica 331

18.6.2 San Gabriel Day Center

After a visit to the United Kingdom in 2000, to the various centers of pediatric palliative care, such as Helen House, Richard House, and other hospices in London, Cambridge, Oxford and Wales, the Foundation decided to open the San Gabriel Day Center on November 24, 2000 (Figs. 18.4 and 18.5). Since the beginning of the San Gabriel Day Center, the Foundation provided funding for the salaries of almost

Fig. 18.4 San Gabriel Day Center, San José, Costa Rica 332 L. Quesada-Tristán and D. Masís-Quesada

Fig. 18.5 San Gabriel Day Center inauguration on November 24, 2000 all professionals except the medical director, Dr. Quesada-Tristan. The Foundation further contributed to the expansion of home visits, purchase of additional medical equipment and the opening of the ﬁrst day center. Later in 2007 a second day center, Dr. Gastón Acosta-Rúa Day Center, was opened in the southern part of the country. Currently, the Foundation provides funding for the salary of the physiotherapist and part of the psychology team, the secretary of the PPCPCC in the hospital, and the coordinator of the volunteers. Likewise, the entire team of the Dr. Gastón Acosta- Rúa Day Center is also paid in full by the Foundation. The remaining staff is paid by the Social Security. The objectives of the San Gabriel Day Center are to provide the following:

• A different environment to either the hospital or the patient’s home in which to receive the patient and his family and to provide the proper treatment. • A greater range of possibilities for intervention with the patient and his family. • A place with a special atmosphere that allows children and parents permanence and belonging. • A point of contact for the various professionals involved in PPC. • A center for teaching and supporting the growth of the PPC team. • A center of support and education to families and patients in their process of illness, death and bereavement. • Regular consultation with the various health care disciplines. • A center for relief, relaxation, social interaction, and network support. • Improvement in the health-related quality of life of children and families in the program. • To provide rehabilitation as an activity to maximize self-esteem, reduce dependence and promote conﬁdence. 18 Pediatric Palliative Care in Costa Rica 333

• To incorporate community resources and volunteerism. • To allow monitoring of patient outcomes, without having to go to the hospital, a place that almost always brings patients’ very bad memories and the risk of contracting contagious illnesses.

The future plans for pediatric palliative care are to build a main center that has a day center, a hospice for those who wish not to die at home, ofﬁces for the Foundation, and a center of national and international training. The day center then becomes a place of intermediate care between the hospital and the home, and meets speciﬁc objectives. The objectives for care of patients and families at the day center are as follow:

1. Perform curing procedures and/or nursing to avoid hospitalization. 2. Objective assessment of the child in pain with a multidisciplinary approach. 3. Review of general symptoms and treatment adjustment. 4. Psychotherapy intervention for the patient and family. 5. To complete the educational program “A Day with the Patient’s Family.” 6. Spiritual support of the patient and family. 7. To change the environment of the patient and/or family. 8. To create a place of rest for caregivers and/or the patient’s family.

The scheduling (day/time) of the patient at the day center is set by the palliative care team and their nurse is responsible for the coordination of this care [2]. In 1992, the Foundation for the Palliative Care Unit was created, a nonprofit organization of civil society whose mission is to support the PPCPCC at the Children’s National Hospital. Initially the Foundation provided almost everything needed to operate as a clinic within the Social Security system, precisely because there were no health policies for palliative care. This initiative was initially not supported by the highest authorities. The Foundation was commissioned to create a bank of medical equipment, such as beds, air and water mattresses, wheelchairs, oxygen concentrators and tanks, lines, phlegm aspirators, etc., that is provided free of charge to patients and families of the program until the patient is discharged or dies. Also, from the beginning the Foundation was involved in the purchase of medicines such as methadone, morphine and other medicines needed to control pain symptoms which the Social Security did not have or were scarce from time to time. Likewise, the Foundation provides the necessary transportation means for home visits throughout the country. The Foundation has an ambulance and two 4×4 vehicles used for home visits in San José, it also has a regular vehicle, a pickup truck, and a double cab 4×4 vehicle for visiting the southern parts of the country. The Foundation pays rent for the day center in the south of the country and bought the San Gabriel Day Center property located in San José. Boxes with food products are distributed monthly to the poorest families, thereby providing extra nutrition needed to improve the patients’ quality of life. The San Gabriel Day Center also fulfills wishes and dreams of girls and boys, such as first communion celebrations, birthday parties, and a big Christmas party each year which are all organized and financed by the Foundation. 334 L. Quesada-Tristán and D. Masís-Quesada

18.6.3 Dr. Gastón Acosta-Rúa Day Center

The Dr. Gastón Acosta-Rúa Day Center opened on February 2, 2007, with the same objectives as the San Gabriel Day Center. The Dr. Gastón Acosta-Rúa Day Center is located in the southern part of the country, which until this point did not enjoy the benefits of pediatric palliative care services but was home to a large number of children and adolescents who could benefit from such services. All the economic costs of the Day Center are absorbed by the Foundation. The PPC team there is composed of one nurse, one psychologist, and one doctor, who are all employed full-time, 5 days a week (Figs. 18.6 and 18.7). The Dr. Gastón Acosta-Rúa Day Center offers the same services as the San Gabriel Day Center, and has the same objectives. It should be noted that the PPCPCC of the Children’s National Hospital is developing palliative care in the south of the country with full logistic support from the Foundation in the absence of financial support from Social Security. All professionals and project costs are being fully funded by the Foundation. Barriers faced by the Dr. Gastón Acosta-Rúa Day Center include long travel distances, lack of general awareness of the benefits of PPC, and lack of information on the number of children who could benefit or need PPC in that part of the country. Table 18.5 demonstrates the slow but steady growth of the project.

18.6.4 Home Visits

The home visit is one of the fundamental aspects of pediatric palliative care, following the principle of the “family as the basic unit of care for a patient.” The palliative

Fig. 18.6 Dr. Gastón Acosta-Rúa Day Center, Pérez Zeledón 18 Pediatric Palliative Care in Costa Rica 335

Fig. 18.7 The pediatric palliative care team in the south area, Pérez-Zeledón. (From left to right) Lic. Psychologist Marlen Badilla, Dr. Héctor Segura, Lic. Nurse Angelita Ávila

Table 18.5 Speciﬁc activities of Dr. Gastón Acosta-Rúa Day Center, 2007–2010

Speciﬁc activities of Dr. Gastón Acosta-Rúa Day Center, South Area

Activity 2007 2008 2009 2010

Number of home visits 320 270 275 290 Patient appointments to the day center 167 234 299 386 Inpatient visits in the Hospital Escalante Pradilla 48 73 89 90 (local hospital) Inter- consultations rejected 0 0 0 0 House calls 742 1113 1202 1332

Source: Statistics, Dr. Acosta-Rúa Day Center care team should aim to maximize the actual and potential resources of the family by educating, supporting and providing the necessary elements for the family to safely care for their ill family member (Figs. 18.8 and 18.9). Each health discipline deﬁnes home visits differently, however the common objectives of a home visit are as follows:

1. Assess the patient’s daily environment. 2. Detect actual and potential resources of the family in their environment. 3. Detect risk factors for the patient in the family environment. 336 L. Quesada-Tristán and D. Masís-Quesada

4. Resolve critical or emergency situations. 5. Educate. 6. Provide the necessary resources for the care of the patient in his home.

Fig. 18.8 Lic. Psychologist Ligia Obando and Lic. Nutritionist Gabriela Masis during a home visit

Fig. 18.9 Vehicle for home visits, 4×4 18 Pediatric Palliative Care in Costa Rica 337

Furthermore, the PPCPCC has deﬁned instances where a home visit is justiﬁed. The reason for a home visit must be fundamentally based on any of the following criteria:

1. First time patient. Every patient admitted to the PPCPCC must have at least one home visit. 2. Patient is in critical condition. 3. Patient with environmental conditions and adverse psychosocial characteristics of high risk. 4. Emergency visit to solve an urgent or unexpected situation. 5. Follow-up visit for stable patients and those whose caregivers have little contact with the team. 6. Home visit by specialty area according to the need and justiﬁcation for each specialty. 7. Visit for closure or mourning. 8. Visit for coordination with local health services or other community resources.

For purposes of planning, budgeting and reporting activities, and ensuring that the PPCPCC covers the whole country, three geographical zones were established [2]. The classiﬁcation of home visits by zone is described in Tables 18.6 and 18.7.

18.6.5 Palliative Phone Calls (Telephone Support Is Available at All Times)

Palliative phone calls are the transmission of information between the palliative care team and the patient or their family. There are different types of telephone support, either scheduled routine calls or calls for urgent care (Table 18.8). Scheduled phone calls are made by any member of the home care team, usually a nurse, to collect intercurrent events, resolve doubts and suggest measures of support. When the patient in the program is visited, and has a reliable primary caregiver, prescription medicines can be provided and these are recorded in their medical history. Scheduled phone calls are an invaluable aid for home control, allowing a greater number of patients to be assisted by the same home care team.

Table 18.6 Classiﬁcation of home visits by geographical zone

Home visit zone

Zone 1 Central County of San José which is within a radius of less than 10 miles from the Children’s National Hospital. Two hours per visit are allowed. Zone 2 Head of the provinces of Cartago. Heredia and Alajuela and surrounding areas, with a displacement of not more than 10 miles from Central Park provincial capital. Four hours per visit are allowed. Zone 3 The remaining areas of the national territory. In this type of visit most often it is necessary to stay overnight in the area. Eight hours per visit are allowed. 338 L. Quesada-Tristán and D. Masís-Quesada

Table 18.7 Total annual home visits for pediatric palliative care

Total home visits, PPC per year

Activity 2007 2008 2009 2010

Home visits South Area, Dr. Acosta- Rúa Day Center 302 270 275 290 Home visits, the rest of the country 583 690 1282 1154 Total 903 960 1557 1444

Source: Statistics, PPCPCC, Children’s National Hospital

Table 18.8 Telephone support per year Total telephone-controlled calls per year Activity 2007 2008 2009 2010

Total scheduled – control calls 2415 3539 3970 5181 Total urgent calls 967 602 567 554

Urgent phone calls are carried out by the family member, rarely the patient, with an episode of breakthrough or worsening of the patient. However, it is important for the medical team to be careful not to commit errors that endanger the patient when trying to solve everything through telephone support. Upon entering the program, families are given a set of instructions regarding our services, but especially the phone number of a pager to answer questions, and emergencies after 3:00 PM [2].

18.6.6 Bank of Medical Equipment for Loan

Because home care is so important, the Foundation has developed a large bank of medical equipment that can be accessed at no charge by families and patients. This bank of medical equipment is stored at the ofﬁces of the Foundation but is available for loan to the primary caregiver, who is responsible for collecting the equipment and returning it when no longer needed. This equipment loan is validated by their identiﬁcation and signature on a delivery slip, making parents responsible for the medical equipment. The medical equipment that can be borrowed includes:

• Hospital beds • Regular mattresses, or air and water ﬁlled mattresses • Wheelchairs, crutches • Oxygen concentrators and oxygen tanks • Respirators • Lines and clips • Infusion pumps and PCA (patient controlled anesthesia) pumps. 18 Pediatric Palliative Care in Costa Rica 339

18.6.7 Grief Support Group for Parents Who Have Lost Children

On October 22,1990, a support group was created for parents and close relatives who have lost children and any siblings of the deceased patients. Since that time the grief support group has consistently met once a week. Services are free, and a professional psychologist remains with the parents and another with the siblings, both psychologists provide therapy. Special referral to the group is not required. Parents are referred by various institutions, programs, or health professionals, regardless of whether they work in public or private institutions. There is no requirement to receive therapy, regardless of whether the child has been taken care of in PPCPCC or not. Follow-up is offered for a period of 1 year; however, if a family member needs more time, there is no restriction. This is a support group, so parents are free to stop attending and return to the group whenever they feel the need.

18.6.8 Purchases of Medicines and Other Services

The PPCPCC at the Children’s National Hospital is able to buy medications that the Social Security does not have in supply with the support of the Foundation for the Palliative Care Unit. Similarly for many years, the Foundation purchased methadone ampules and tablets, since the Social Security for many years did not have this drug. The Foundation may purchase any other medications a patient may need that are prescribed by any of the doctors at the clinic until Social Security funds the purchase or until the patient dies, given that the administrative paperwork often takes a long time. Likewise, the Foundation supplies special food products for some children, and a monthly box of food products for the poorest families. Many palliative care patients are beneﬁciaries of the bank of medical equipment. Additionally, the Foundation can help pay patient expenses associated with the loan of medical equipment when a family has very limited economic resources. For example, the Foundation can help pay for the increased electric bill associated with the patient’s use of an oxygen concentrator at home.

18.7 History of Pediatric Palliative Care Initiatives

A history of pediatric palliative care initiatives in Costa Rica is given below.

1990: The first palliative care unit, PPCPCC, opened in the country at the Children’s National Hospital. 1990: First group of health professionals voluntarily working in palliative care outside working hours at Cartago. This led to the association “Lets Walk Together” with paid working hours for health professionals until this day. 1991: The first adult Pain Clinic opened at the Calderón Guardia Hospital. 1992: The beginning of the Foundation for the Palliative Care Unit at the Children’s National Hospital, July 1992. This is the first and oldest foundation for palliative care in Costa Rica. 340 L. Quesada-Tristán and D. Masís-Quesada

1994: The Palliative Care Clinic in Alajuela was ofﬁcially opened in 1994. The opening of the “Day Hospital” took place in 1996 and in 2004 the Palliative Intensive Care Unit was built.

From this moment, the various groups and initiatives grew quite simultaneously.

1999: The National Center for Pain Management and Palliative Care received approval by the Board at the 7319 directors meeting on April 8, 1999. 2003: The Federation of Associations and Foundations of Palliative Care was established on September 2003 with the aim of unifying efforts and work criteria, focused on consolidating the hospice movement in Costa Rica. 2004: The University Santa Paula, opened in March 2004, became the first institution to provide interdisciplinary palliative care for professionals in the health area and to date has matriculated 62 graduate professionals. 2005: The Costa Rican Association of Palliative and Pain Medicine was created within the College of Physicians in Costa Rica. The University Anselmo Llorente y La Fuentes (Catholic University) started a second master’s degree in interdisciplinary palliative care in the country, and currently has matriculated 98 graduate professionals. 2008: The specialty of palliative medicine was accepted by the College of Physicians of Costa Rica in September 2008. 2009: The school of medicine at the University of Costa Rica started a specialization in Palliative Medicine for doctors. Duration is 3 years (six semesters) full-time, equivalent of 44 h per week (plus medical rounds) during the six semesters, with a total of 72 credits at a rate of 12 credits per semester. As an initiative of a group of specialists in palliative care and with the unquestionable support of the Minister of Health, Dr. María Luisa Ávila, the National Council for Palliative Care was established on December 5, 2009. The Council advises the Ministry of Public Health policies in all matters relating to palliative care. The first challenge of the Council was to develop a plan, which was finalized in 2010, to make a diagnosis of the situation and to develop palliative care in the country. The next step is the development of health policies in the field of palliative care.

18.8 Legislation

Before 1990, the country had no legislation on palliative care. In 1990, the husband of a patient with a terminal illness of metastatic cervical cancer made an appeal to the Constitutional Court because private pharmacies and the pharmacy of a tertiary hospital care refused to release the proper prescription of morphine needed to control the patient’s pain. Each pharmacist in the country interpreted the law in their own way. The legislation said that the doctor could prescribe morphine for three full days, and re-prescribe every 3 days, and so on. Some pharmacists even asked 18 Pediatric Palliative Care in Costa Rica 341 patients to deliver the empty ampules, others questioned the dose prescribed by the doctor, and others refused to give the complete prescription for 3 days and forced the patient or patient’s family to come every day to obtain the medicine at the hospital or private pharmacy. In 1990 there was a shortage of morphine in the country because of a lack of proper planning; the patient’s husband was forced to travel the country looking for ampules of morphine to relieve his wife’s pain. At this time the husband and brother of the patient decided to lodge an appeal to the Constitutional Court, demanding protection of the health rights of their wife and sister. The Constitutional Court accepted the appeal for protection and required the private pharmacy and the pharmacy of San Juan de Dios Hospital to release the prescription needed to ease the patient’s pain. One of the authors of this chapter had the honor of providing these prescriptions to the patient and explaining to the Board the issues of cancer patients in Costa Rica, and ﬁghting for the need to improve patients’ health-related quality of life. The Constitutional Court was given a large document that argued the need for pain control and palliative care. Two years later, the Constitutional Court announced the following summary to Costa Rica and to the world:

1. If it is true that pharmacies are private, they perform a social function directly related to health, and cannot refuse to dispense a prescription legally constituted. 2. A pharmacist cannot refuse to dispense a prescription legally constituted and cannot change the prescription. You cannot invade another professional’s ﬁeld. 3. It is the responsibility of the physician what happens to the patient.

But the most important statement by the Constitutional Court was: “All Costa Ricans have the right to die with dignity and without pain.” This ruling opens the door for the treatment of pain and palliative care and the possibility of improving the quality of life of a person who is confronting the terminal phase of an illness from the legal standpoint. After this ruling people began to demand Social Security, for the proper relief of cancer related pain and palliative care for their loved ones. Law 7756 “Beneﬁt for those responsible for patients that are terminal” was initiated on March 20, 1998 whereby:

1. It is recognized that the situation of a terminally ill person must be addressed with the patient and the patient’s family. 2. Subsidies are available to the patient so that one of their family members or closest friend can care for them for a period of 6 months before death, reimbursing 60% of their salary to stay at home to care for their loved one.

Thus the law recognizes the model of palliative care that includes home visits, participation of Non-Governmental Organizations, the family and the health system, as the best model of care for a person facing the terminal phase of illness. Family members care for the patient and with palliative care training they prepare to follow their relative throughout the evolution of the disease. For a long time, the Social Security did not promote these rights and benefits. Additionally, the subsidies might have been insufficient for many poor families for 342 L. Quesada-Tristán and D. Masís-Quesada whom not receiving the salary supplement could mean that they could not send their children to school or even limit themselves financially even more. For this reason in 2008, Law 7756 was amended so that the relative or primary caregiver receiving the subsidy is accredited with the sum of three times the minimum wage. Overall the aim was to involve more people willing to stay at home caring for a loved one. If for some reason the family member does not die within 6 months, the physician can continue to write the caregiver a letter on a monthly basis to exempt them from work until the patient dies. In the same manner, Law 7765 was created by the Costa Rican Institute Against Cancer on June 4, 1998. This law does the following:

1. Establishes cancer as a priority in health care and funds are provided for such care. 2. Under Article 28, 50% of the net profit from a lottery game called “Raspaditas” (scratch lottery) will be utilized to finance associations and foundations for palliative care with the amounts divided equally. 3. Recognizes and consolidates the link between civil society and the state to address together the specific problem of patients with terminal illness such as cancer or any other disease.

The equal distribution of the lottery profits helped to consolidate the Palliative Care Unit. It helped to buy a bank of medical equipment for patients to be cared for at home, to purchase a vehicle to transport and make home visits, to offer special food to patients, and to purchase medicines that the Social Security did not purchase or did not have. Profits also pay for the purchase of diapers for patients in the final stage of life, and to pay the salaries of doctors, nurses and psychologists that Social Security could not provide to set up a primary care team. Unfortunately, the creation of this law by the Costa Rican Institute Against Cancer was declared unconstitutional on March 30, 2008, since it contained some irregularities. The most important thing is that the collecting agency and administrator of the scratch lottery, known as the Social Protection Board, continues to give resources to the Palliative Care Unit to care for patients. It is our understanding that this is a unique model to support the development of palliative care.

18.9 National PPC Program

In Costa Rica the pediatric palliative care program covers the entire country, through the Children’s National Hospital and the 2 day centers mentioned above. This model of care is very original and contains all of the following:

1. Intra Hospital Visit 2. Home visits throughout the country 3. San Gabriel and Dr. Acosta-Rúa Day Centers 18 Pediatric Palliative Care in Costa Rica 343

4. Monitoring the process of mourning for the whole family 5. Bank of medical equipment for free loan 6. Daily food(meals) to the poorest families 7. Education 8. Purchase of medicines that the Social Security does not have 9. Financial support for utilities bill payment 10. Fulﬁlling children’s wishes and dreams 11. Logistical support, 24 h a day, 365 days a year.

Nothing in this model could have happened without the support of the Foundation for the Palliative Care Unit, which is a non-proﬁt program for health care with budget restrictions. Even so, Costa Rica has a very good health system that helps to strengthen pediatric palliative care. The vast majority of adult palliative care programs also have an association or foundation that supports and raises funds for patient care. This is a mixed model that is quite unique, where civil society organizations along with the State take care of palliative care for both adults and children. The main contributors to our program are the people of Costa Rica. When visited at their workplaces the general public has been supportive when told what the model is and how donations can be used. This is a system that has maintained itself for 20 years. The palliative care beneﬁts for Social Security in Costa Rica are as follows:

Quality care component. The comprehensive care offered definitely helps to improve the health-related quality of life of patients and the possibility of reaching the most remote homes in Costa Rica. Lending medical equipment also gives the program a unique component. Satisfaction of users. The program receives hundreds of letters of appreciation and the program continues to grow. It is clear that there will always be families with unmet needs despite having a large level of dysfunctionality. Humanization of care. One of the pillars of care, and what most satisfies the families and patients, is the feeling of being cared for as first class patients. Lower costs. PPC prevents unnecessary hospitalizations and consultations. A vast majority of families and patients do not want to return to the hospital. As such, the Social Security in Costa Rica is more aware of these situations. Participatory: community resources, state and voluntary associations, foundations. Supportive health systems, such as the Costa Rican Social Security Fund in Costa Rica, similar to that of England or Canada, are always at risk, at least in Latin America. Participation of civil society in an organized manner, through associations and foundations, ensures support (including economic support), removes weight and stress to the health care system, makes health care democratic, and enriches and humanizes the service. 344 L. Quesada-Tristán and D. Masís-Quesada

18.10 New Challenges

New challenges include developing the program to include all children who would benefit from palliative care in Costa Rica, constructing a hospice that can house the offices of the Foundation that supports us, developing a center for teaching throughout Latin America for training in pediatric palliative care, opening a specialty of pediatric palliative medicine for all interested pediatricians in Latin America, and developing new day centers in the center and north of the country. The overarching goal is to improve efficiency, excellence, equity and access to palliative care for our children. The goal is to make this a reality soon.

References

1. Instituto Nacional de Estadística y Censos (2011) Indicadores Demográﬁcos [1999– 2009]. INEC. Boletín anual 1(11) Dirección electrónica: http://www.inec.go.cr/Web/Home/ pagPrincipal.aspx. Accessed 2011 2. Social Security, National Children’s Hospital, Clinic for Palliative Care and Pain Management (2009) Manual of standards, activities, and functions of interdisciplinary team. pp 23–24 Chapter 19 Pediatric Palliative Care in Mexico

Regina Okhuysen-Cawley, Armando Garduño Espinosa, Sandra Paez Aguirre, Yuriko Nakashima Paniagua, Marylou Cardenas-Turanzas, María Cristina Reyes Lucas, Jorge Mauricio Cervantes Blanco, Claudia Olivares Díaz, Teresa Hernández Morales, María de los Angeles González Ronquillo, Esperanza Alatorre Martínez, and Cointa Arroyo Jiménez

Abstract Pediatric palliative care services are a challenge worldwide, particularly in developing countries such as Mexico. Substantial improvements in the care of neonates and children with life-threatening diseases have been made over the last decade, with centers established within pediatric tertiary facilities located in the main metropolitan areas of Mexico City, Guadalajara and Monterrey. Care is provided by pediatric subspecialists, primarily oncologists and anesthesiologists with an interest in pain management. A high percentage of children seen by palliative care providers in Mexico have underlying malignancies. A signiﬁcant segment is represented by neurologic diseases. Active collaboration via personal communication aided by electronic media between these institutions has resulted in major shifts in health policy, education, and patient care. An improved understanding of the importance of appropriate symptom control has facilitated the use of strong opioids for cancer care in Mexico. Health care delivery remains problematic in more marginalized populations, especially indigenous populations residing in the southeastern parts of the country.

Keywords Mexico · Pediatric · Cancer · Terminal · Pain · Opioid · Healthcare · Policy · Education · Resources · Indigenous populations · Advance care planning · Death · Bereavement

19.1 Introduction

Mexico is the 14th largest independent nation in the world, and with a population of 112 million, the largest Spanish speaking country. Mexico is an emerging economic power: the middle class has expanded in the last two decades, resulting in the 13th highest gross domestic product in the world. The country is situated between the United States of America to the North, with Guatemala and Belize forming

R. Okhuysen-Cawley (B) Pediatric Critical Care Medicine and Supportive Care, The University of Texas MD Anderson Cancer Center, Houston, TX 77030, USA e-mail: [email protected]

C. Knapp et al. (eds.), Pediatric Palliative Care: Global Perspectives, 345 DOI 10.1007/978-94-007-2570-6_19, C Springer Science+Business Media B.V. 2012 346 R. Okhuysen-Cawley et al. the southern border. It is flanked by the Pacific Ocean and the Gulf of Mexico. The nation’s abundant natural beauty and rich history have placed it at the top of the UNESCO’s world heritage sites for the Americas. The country is well known for its biodiversity, beautiful beaches and incomparable cuisine. Mexico’s urban population has consistently grown during the last decades due to influx from rural areas as the country evolves into an industrial power. It was estimated that during the year 2010, 76.8% of the population was living in communities with 2,500 or more residents [1]. Indeed, it is estimated that 23.2% of Mexicans live in about 189,000 small towns dispersed among the rural parts of the country. This geographic distribution represents a challenge to the Mexican Health Care System given that many of these tiny communities are located in remote areas with limited means of communication. The population census completed in 2010 by the Instituto Nacional de Estadistica y Geografia, which is an entity equivalent to the US Census Bureau, reported that 44.3% of the rural often remote communities with less than 5,000 residents responding to the census during that year did not have any federally or state-funded medical services such as clinics or community health centers and that about 90% of these small villages did not even have a private physician’s office in town. Major metropolitan centers include the capital, Mexico City, located in the central part of the country and one of the largest cities in the world (population 21 million), Guadalajara (population 6 million) and Monterrey (population 5 million). Other densely populated cities include Toluca, located close to Mexico City, Ciudad Juarez, and Tijuana, located in close proximity to the United States border states of Texas and California.

19.2 Medical Services

The majority of medical services to Mexican citizens of all ages range from preventive primary interventions to specialized, highly advanced tertiary care provided through government and industry-subsidized networks. These networks are diverse in the types of populations covered and are not integrated into a unified national health care service despite the growing tendency in the last decade to descentral- ize its administrative bodies. The main networks in the country are the Instituto Mexicano del Seguro Social (Mexican Institute of Social Services) and the Instituto de Seguridad y Servicios Sociales de los Trabajadores del Estado (Institute of Security and Social Services for Government Workers). These two entities cover the majority of the civilian workforce. Enrollment in these healthcare systems occurs with employment in Mexican industrial and service companies. Fairly extensive coverage, which includes the beneficiaries and their dependents (including the parents), includes most prescription pharmaceuticals so that no out-of-pocket expenses are incurred as long as the health care providers consulted are affiliated with the system. Other smaller government funded networks include the Secretaria de la Defensa Nacional (Armed Forces) and Secretaria de Marina (Naval Forces). 19 Pediatric Palliative Care in Mexico 347

Uninsured Mexican citizens can access health care thru the Secretaria de Salud (Ministry of Health) or state funded health services facilities through the Secretaria de Salubridad y Asistencia. Highly developed private medical care for serious medical conditions, comparable to what is typical of care provided in the United States, is available in larger urban centers but is prohibitively expensive for the vast majority of Mexican families. The impact of the private preventive and acute-care medical services into the health of the population in Mexico is thus minimal; it was estimated that during the year 2002 the population covered by private providers of medical care was less than 2to3%. Care for complex or serious medical conditions is heavily regionalized in Mexico. This is particularly true for general pediatric and subspecialty pediatric care. Tertiary pediatric hospitals are found in the major metropolitan centers and in some state capitals. Many of these referral hospitals serve vast geographic areas and have complex referral protocols designed to expedite care to patients most likely to beneﬁt from advanced interventions. Some hospitals with limited capacity discour- age transfer of moribund patients or those unlikely to derive beneﬁt from expensive interventions. The vast majority of transports occur by ground, with few if any specialized services to ensure the child’s safety and stability during the trip. Logistic and transportation issues are frequently reported and commonly delay critically needed interventions for seriously ill or injured children.

19.2.1 Pediatric Palliative Care

Although the rates for preventable childhood deaths continue to decrease in the developed world, this remains a challenge in Mexico and other Latin-American nations. Death certiﬁcate registries and surveillance of causes of death have a long tradition of providing indicators to understand health problems, allocate services, and to determine goals or benchmarks to measure the effects of health interventions at the population level. Under the assumption that if medical care and standard technologies are available in a given health care system some deaths may be obvi- ated. The rates of preventable deaths in Mexico provide us with a tool to infer some of the important health problems and needs for services. The Mexican Ministry of Health (Secretaria de Salud) estimated that between the years of 2000 and 2004 some 38.5% of all deaths occurring in Mexico were potentially preventable and that about two-thirds of these deaths were a consequence of non-transmissible diseases including chronic diseases frequently associated with disabilities and involving long term care and costly medical interventions [2]. The proportions of children dying from preventable causes decreased with age in that time period, from 78.7% for children less than 1 year of age to 44.2% in the group of 5–9 years old and showing an increase in the proportion of preventable deaths, primarily due to accidents and other traumatic injuries, as is noted (47.9%) in children aged 15 to 19. The report conﬁrms an increasing tendency from the year 348 R. Okhuysen-Cawley et al.

Fig. 19.1 Emotional Containment by Nurse and Thanatologist team of Palliative Care of INP; in home visit (courtesy of Unit of Palliative Cares of INP)

2000 to 2004 of the rates of preventable deaths due to non-transmissible diseases in Mexico, and it seems fair to assume that the demand for supportive and palliative care services will increase during the next decade (Fig. 19.1). Perinatal and congenital problems cause the majority of deaths in infants and young children. In Mexico, cancer is the second most common cause of death in children. It is estimated that 7,000 pediatric malignancies are diagnosed each year in Mexico, including 3,500 cases of leukemia. A review of death certificates of children aged 18 and under, indicated that a total of 2,366 deaths due to cancer were registered during the years 2002 to 2004. Among them, more than half (57.3%) died from leukemia or lymphoma [3]. Only a small fraction of these children have adequate insurance, a factor that contributes to delayed presentation, increased morbidity and mortality, and significant treatment attrition due to financial causes. Although significant challenges persist in the optimal management of these children due to the scarcity of properly trained pediatricians and pediatric oncologists, the recent implementation of the “Seguro Popular” [Popular Medical Insurance] and the “Seguro para una Nueva Generacion” [Medical Insurance for a New Generation] appear to have a positive impact on outcomes, in a compressed timeframe. Both initiatives represent the response of the federal government to decrease health inequalities in the country by covering the 19 Pediatric Palliative Care in Mexico 349 uninsured groups that traditionally did not have access to federal or state funded health services. The importance of pediatric palliative care is increasingly recognized in Mexico. Barriers to access for appropriate medical care in general and specific to palliative care have been described and reported at specialty conferences. Identified barriers include the regionalization of subspecialty pediatric care which makes access difficult for many Mexican families, and limited knowledge on a family level and the provider level regarding basic principles of palliative care. Only a fraction of pediatric hematology-oncology centers have physicians and other key staff versed in care of children with life-limiting problems. Most of the physicians providing advanced symptom control to pediatric patients are oncologists and anesthesiologists with an interest in chronic pain management. Board certification is now available to physicians through the Mexican Society of Anesthesiology and will soon be governed at the primary specialty level as is customary in some other countries, including the United States. Most of the Mexican physicians who provide pediatric palliative care communicate frequently and informally via electronic media with pediatric palliative care experts in other countries, including Dr. Lisbeth Quesada in Costa Rica and Dr. Rut Kiman in Argentina. Many of these physicians are members of international associations such as the American Academy of Palliative and Hospice Medicine and the Asociacion Latinoamericana de Cuidados Paliativos. The national counterpart to this association, the Asociacion Mexicana de Cuidados Paliativos is currently in formation. There are postgraduate programs for pediatricians, nurses and other healthcare providers of pediatric palliative care in Mexico (Fig. 19.2).

Fig. 19.2 Team of domiciliary visit of the Unit of Palliative Cares of INP (courtesy of the Unit of Palliative Cares of INP) 350 R. Okhuysen-Cawley et al.

19.2.1.1 Settings of Care The most established pediatric palliative care medicine services in Mexico are based at the premier tertiary hospitals in Mexico City and Guadalajara. The oldest in the country is based at the Instituto Nacional de Pediatria [National Institute of Pediatrics] in Mexico City. This service was established approximately 7 years ago to support other subspecialties based at this referral hospital. It operates as an interdisciplinary team providing in-hospital consultation in all patient care areas. Universal principles of pediatric palliative care, including a total, holistic approach to care is emphasized thorough evaluation of the child’s symptoms and communication with the patient, the family, the referring medical team and within the palliative care team itself. Interventions provided range from symptom management including pain, nausea and fatigue to assistance with management and hospital discharge of technologically complex patients, such as those requiring tracheostomy or gastrostomy placed with palliative intent. The team is currently composed of four pediatricians with subspecialty backgrounds including hematology-oncology, two specially trained nurses, two psychologists, and social workers. Children hospitalized in Mexican hospitals are usually grouped by age to facilitate appropriate developmental and family-centered care, and this hospital is no exception. Patients are seen in all inpatient units, including the neonatal and pediatric intensive care units. Outpatient consultation and on-going support including home visits are available to patients upon discharge from the hospital. It is estimated that approximately 600 families have been served to date by the palliative care service at the Instituto Nacional de Pediatria. A recent review of the institutional database revealed that the most children referred to the service were infants or toddlers, approximating 60% of patients seen. The next major patient group was the adolescent population, approximating 16% of referrals. Thirty-nine percent of patients seen by the palliative care service had underlying neurologic disorders including congenital anomalies, sequelae of perinatal or hypoxic-ischemic injury, and degenerative diseases. Approximately 34% of consultations were prompted by underlying malignancies, most commonly leukemias, which mirrors the epidemiology of pediatric cancer in Mexico. Twenty percent of patients in the cohort of patients described by Garduno and his associates at the Instituto Nacional de Pediatria had clinical ﬁndings consistent with severe static encephalopathy, including patients displaying a minimally conscious or a persistent vegetative state. The Instituto Nacional de Pediatria is considered the top pediatric teaching hospital in the nation. An extensive pediatric palliative care syllabus describing a comprehensive approach to the child suffering from a life-limiting disease is presented to physician trainees completing rotations at the hospital. Ethical management principles are discussed with an emphasis on streamlining care in order to minimize and prevent potentially burdensome interventions to the child that may have devastating ﬁnancial consequences to the family (Fig. 19.3). 19 Pediatric Palliative Care in Mexico 351

Fig. 19.3 Hospital Civil Juan I. Menchaca, in Guadalajara

A pediatric oncology-based palliative care service is available for children with cancer referred to the tertiary pediatric service based at the “Hospital 20 de Noviembre”, also located in Mexico City. The team is also an interdisciplinary, consultative, physician-led service currently in development treating children of all ages with symptoms due to underlying malignancies. Social workers and psychologists staffing other patient care areas provide support to the physicians. Patients seen by this service typically have a significant symptom burden due to advanced disease. Many of the children evaluated by the palliative care team have advanced disease at diagnosis, or are suffering from disease recurrence or the effects of therapy. A multidisciplinary, primarily hospital based model is employed. Resident and allied health care educational offerings are available. There is very active collaboration via personal and electronic communication with other pediatric palliative care providers within the city, within the nation and with specialists residing in other countries. The second largest city in Mexico is Guadalajara, located on the Western coast. This city has experienced remarkable growth in the last decade, and is now home to almost 6 million persons. There are two medical schools in the city, one affiliated with the Universidad de Guadalajara, which dates back to 1792, and one established at the Universidad Autonoma de Guadalajara in 1935, each with established pain management and palliative care services. There is ongoing collaboration between adult and pediatric specialists based at these institutions and the state government, resulting in a statewide palliative care initiative which benefits children and adults alike. An adult multidisciplinary palliative care service was established approximately 18 years ago at the Hospital Civil Dr. Juan I Menchaca, the county general hospital which serves as the primary teaching facility for the Universidad de 352 R. Okhuysen-Cawley et al.

Guadalajara. The service was initially designed to support the adult medical services in a consultative fashion. A pediatric service was convened in 2005 and is now functioning independently. The pediatric team is staffed by a full-time pediatric palliative care specialist who was trained in the United States, Costa Rica and Argentina. A second physician who is subspecialty-trained in hematology/oncology assists in the care of most of the children with underlying malignancies. These physicians are supported by ancillary personnel which is shared with other hospital services, including social workers, psychologists, and administrative staff. The palliative care team is actively involved in the education and training of all pediatric residents at the hospital. Approximately 200 children are seen each year by the Pediatric Palliative Care service at the Hospital Civil Juan I. Menchaca. Most of the consultations originate from the neurology services, the neonatal intensive care unit, and the pediatric intensive care unit, which provide tertiary care services for a large area that includes several neighboring states. Services provided are comprehensive symptom management and psychosocial support. Outpatient and home-based services are in expansion. Research done within the clinical palliative care service has identified a multitude of physician-based and family-based barriers to care, primarily due to lack of knowledge or erroneous perceptions of the intent of palliative interventions. The Pediatric Palliative Care Service at the Hospital Civil Juan I Menchaca works closely with “Mi Gran Esperanza” which translates into “My Great Hope”, a philatropic association based in Guadalajara. This association, which was founded approximately 15 years ago has been instrumental in the acquisition of capital medical equipment for the hospital. It has made diagnostic and therapeutic procedures possible for thousands of impoverished children with cancer while facilitating comprehensive care including supportive counseling, academic assistance for patients of all ages and their siblings, financial and food programs, pastoral care and the availability of medications through its “Farmacia Popular”, or popular pharmacy, which distributes industry-donated prescription drugs to needy families. Palia is a multidisciplinary organization founded approximately 10 years ago in collaboration with the multidisciplinary pain management services associated with the Secretaria de Salud. and the then-emerging palliative care service at the Hospital Civil Juan I. Menchaca. Palia offers multidisciplinary support primarily to adults but also to some children requiring outpatient palliative care services in the metropolitan area. Subspecialty medical consultation is provided in a free-standing clinic, which is equipped with an interventional suite for procedures such as regional blocks or epidural injection when indicated. Comprehensive psychosocial support and financial counseling are available at a nominal cost. Additionally, the organization operates a small fleet of vehicles for team home visits. CANICA (Centro de Atencion al Nino con Cancer), the Spanish word for marbles, is a member of ICCPO (International Confederation of Childhood Cancer Parent Organizations) founded in Guadalajara in 2003, and provides a spectrum of social support services including patient, sibling and parent counseling. An accredited school program from kindergarten through secondary education is offered, with home support as needed. 19 Pediatric Palliative Care in Mexico 353

19.2.1.2 Provision of Services Pharmacologic management of pain and other burdensome symptoms has improved significantly over the last decade in Mexico, mirroring progress in many parts of Latin America with the introduction of opioids and dedicated efforts to improve professional and patient education on safe and effective strategies for pain management. A sequential approach to pain management is promoted, as described by the World Health Organization. Non-opioid analgesics/antipyretics not currently available in the United States widely used in Mexico for mild to moderate pain include nimesulide and metamizole. Acetaminophen and traditional non-steroidal anti-inflammatory agents such as ibuprofen and naproxen are used extensively. Tramadol is available for oral and intravenous administration in many areas, and is typically reserved for moderate to severe pain. Morphine is available for oral and parenteral administration; however, methadone and hydromorphone are only available as oral formulations in urban centers. Transdermal prepara- tions include fentanyl and buprenorphine, although local availability varies even within cities and obtaining and filling prescriptions remains a cumbersome process requiring ongoing collaboration between physicians and local government. Adjuvant medications including antidepressants and anticonvulsants are available as well. Benzodiazepines are utilized for sedation and seizure management (Fig. 19.4).

Fig. 19.4 Medical Pediatrician of the Unit of Palliative Cares; taking care of patient with muscular atrophy spinal type I (courtesy of the Unit of Palliative Cares of INP) 354 R. Okhuysen-Cawley et al.

19.3 Conclusion

Traditional medicine rooted in pre-Columbian culture remains an important resource within indigenous communities with limited access to contemporary medical care. More than 30 indigenous populations have been identified in Mexico, more numerous in the southeastern states of Oaxaca and Chiapas and along the coastal regions of Jalisco and Nayarit. Infant and childhood mortality remain extremely high in these communities despite the efforts of federally funded programs targeted to prevention of malnutrition and infectious diseases; the average life expectancy of those reaching adulthood is as many as 20 years lower in the poorest and most isolated indigenous communities which are located in remote areas with difficult access due to rugged terrain making roads impassable during certain times of the year. Many of these indigenous communities are distrustful of outsiders including health care providers or may lack access to any modern medical care, relying heavily on religious leaders and traditional rituals and methods based on ancient philosophies that emphasize life and death as a transcendental continuum. Herbal medications are utilized along with special chanting and music for the relief of pain and other symptoms dying persons experience. The importance of culturally sensitive care has been highlighted by palliative care physicians studying these communities. Care at the end-of-life in Mexico differs significantly from what is observed in the United States. Although it is not uncommon for the elderly to die at home surrounded by family members, most pediatric deaths due to protracted illness occur in hospital settings. In an evaluation of cancer deaths occurring in the three main metropolitan areas of Mexico (Mexico City, Guadalajara and Monterrey) during 2002–2004, Cardenas-Turanzas et al found that 85% of children had died in a hospital or clinic. Most of the children dying at home come from impoverished families, the reverse of which is observed in more affluent societies in other countries. This phenomenon has several explanations, including a significant stigma attached to the death of a child within a home setting, also observed in some eastern cultures. Families with any sort of insurance or the ability to pay for hospital care commonly avoid having the child die at home, particularly if other young children reside in the household. This likely reflects customs evolved over the last few decades but reflects the relative scarcity of support services for terminally ill children, a pervasive problem throughout the world.

Case Study 1 Oscar is a 30 month-old boy who has been residing in the pediatric intensive care unit. He was noted to be ﬂoppy by his parents, but no speciﬁc reason could be established at the health center serving his community in rural Michoacan. He became acutely ill with respiratory distress, requiring eventual transfer and admission for pneumonia at the age of 3 months. The pneumonia 19 Pediatric Palliative Care in Mexico 355

appeared to clear, but Oscar could not be separated from mechanical ventilation despite several attempts; tracheostomy was eventually performed for prolonged ventilator support. A diagnosis of spinal muscular atrophy type I was established, but the child could not be discharged from the hospital due to the lack of facilities and technological support in his home community. Oscar’s mother has remained at his bedside; his father stays at home looking after Oscar’s siblings and continuing to work. He visits Oscar every few weeks when he is able to get transportation into the city, 3 h away from his home. Oscar has become progressively debilitated. He has had several episodes of pneumonia and has had several ruptured lungs when increased ventilator settings are required. He is very interactive and has endeared himself to the intensive care unit staff; and there is dissension when the palliative care physician who has been working with Oscar recommends against escalation of care. His mother, separated from her husband and her community, feels burdened when asked to make health care decisions by the intensive care unit staff. The boy develops septic shock and is managed with high doses of vasoac- tive agents and transfusions to support his blood pressure; deep sedation is required for extremely high ventilator settings, and he has yet another collapsed lung, requiring chest tube placement. A patient care conference is called by the palliative care physician. The neurologist and pediatric intensive care physicians appear upset and are reluctant to limit interventions since there are no universally accepted criteria for limiting support in Oscar’s situation. His mother expresses her frustration – she is concerned that Oscar is suffering, but does not want to be the one responsible for the decision to limit life-sustaining medical therapy, especially since she is alone with the boy in this strange city and is worried that her husband’s family will blame her for the boy’s death. The meeting ends without any clearly outlined goals of therapy other than ensuring ongoing symptom control. Oscar’s pediatric intensivist runs into the palliative care specialist in the hallway several weeks later. He appears emotionally distressed as he informs her that Oscar’s condition has worsened. He has cared for Oscar for almost 3 years now, and discloses that he feels in his heart that the boy is tired. The palliative care physician offers words of support to the intensivist, and another meeting is planned. This time, Team Oscar reviews the little boy’s hospital course and the road that lies ahead. This time, they come to an agreement regarding goals of care. They inform the mother that given his poor overall prognosis, Oscar will not be subjected to escalation of interventions the next time he deteriorates. She is upset, but grieves appropriately and is able to share her sense of relief with the palliative care team. Oscar’s father and brothers visit more frequently and he is baptized in the intensive care unit. The event is celebrated with gifts, cake and decorations. 356 R. Okhuysen-Cawley et al.

Several weeks later, Oscar develops a fever. His oxygen requirements increase. The resident on call cannot resist the temptation to increase the ventilator settings, and Oscar’s left lung collapses. This time, however, Oscar receives comfort measures only. His family is allowed extra space and time at the bedside. The priest visits them. He is given medications to optimize his sedation and analgesia. He is able to smile at his family and is held while he expires peacefully.

Case Study 2 Xochitl is a little girl from a small Huichol community in the Mexican state of Nayarit. She is noted to have difficulty feeding and has difficulty breathing soon after she is born. She is brought to a community health care center, only to find it has been closed. The family is distressed by her worsening appearance. They think of taking her to Tepic, several hours away, but have no money to make the trip. A foreign physician visiting the area with a missionary group is brought to her village, and finds that Xochitl has features of a genetic disorder usually associated with severe congenital heart disease. Xochitl’s family is devastated. Family and neighbors converge on the infant’s home. She is one of seven children, and the family realizes they cannot afford medical care. They note that the baby is placid and appears comfortable. The local healer comes to the family’s home and performs rituals to rid the child of discomfort and bring her peace. Traditional music is played, and the infant is offered small amounts of sugar water when she appears thirsty or hungry. She is unable to swallow, so her family keeps her mouth moist and holds her constantly. Xochitl soon dies, and is buried. The family is sad, but realizes that their beautiful girl has continued on her journey.

Case Study 3 Miguelito is a 3 year-old previously healthy boy who has developed fever and refuses to walk. He is seen by several physicians; bloodwork is eventually ordered and he is found to have a type of leukemia which is difﬁcult to treat. His family is referred to the local pediatric hospital and he begins his treatment. He feels better after a few days, and goes home. Unfortunately, he quickly relapses despite more intense chemotherapy. His family is distraught but comforted by the care he receives. Volunteers play with him when he is hospitalized and his family is at work. His siblings have difﬁculty coping and are having trouble at school, so appointments are made for them to see the 19 Pediatric Palliative Care in Mexico 357

palliative care team’s psychologist. Miguel’s dad has been ﬁred from his job, and he is assisted in securing a new job. Basic food items are given to the mother along with ﬁnancial support for transportation. Miguelito’s life is coming to a close. His family refuses to bring him home. The nurses and palliative care physician ensure that he and his family have adequate support, and anticipate bleeding that might occur as his condition worsens. He is able to die comfortably with his family at his side soon thereafter.

References

1. Instituto Nacional de Estadistica y Geograﬁa (2010) Principales resultados del Censo de Poblacion y Vivienda 2010. Instituto Nacional de Estadistica y Geograﬁa. http://www. censo2010.org.mx/. Accessed 2011 2. Secreteria de Salud. La Mortalidad en Mexico 2000–2004. “Muertes evitables: Magnitud, distribución y tendencias” 3. Sistema Nacional de Informacion en Salud (2006) Dirección general de información en salud. http://sinais.salud.gob.mx/mortalidad/. Accessed 09 Mar 2006 Chapter 20 Pediatric Palliative Care in the United States of America

Stacy F. Orloff

Abstract This chapter describes how pediatric palliative care functions in the United States. Descriptions include health systems and policy, epidemiology of childhood illness and disease trajectory. Further information is provided regarding the need for pediatric palliative care programs and services and how these programs are funded and operationalized across America. Lastly, two long term well established pediatric palliative care programs are highlighted.

Keywords United States of America · Pediatric palliative care · Children’s Project on Palliative/Hospice Services (ChiPPS) · National Hospice and Palliative Care Organization (NHPCO) · Medicaid waiver · Hospice care

20.1 Introduction

The United States of America is the fourth largest country in the world based on land mass, smaller than only Russia, Canada, and China [4, 15]. According to 2010 United States census data, the population of the United States is 308,745,538. This puts the United States as the third most populous country in the world [19]. The United States consists of 48 contiguous states, Alaska, Hawaii, and the District of Columbia, the nation’s capital on land set aside by the federal government. From a geographical perspective the United States is often divided into seven major regions. This geographical differentiation is based primarily on climate, geography, and history [4]. The government is based on the federal system, which gives each state many powers similar to other nations’ governments. States’ rights are an important component of the federal system. There have been several signiﬁcant historical events in the United States in which the sovereignty of the states has been a major issue. The right of the state to enact its own laws does impact the provision and delivery of healthcare and as such will be brieﬂy described in this chapter.

S.F. Orloff (B) Palliative Care and Community Programs, Suncoast Hospice, Clearwater, FL 33760, USA e-mail: [email protected]

C. Knapp et al. (eds.), Pediatric Palliative Care: Global Perspectives, 359 DOI 10.1007/978-94-007-2570-6_20, C Springer Science+Business Media B.V. 2012 360 S.F. Orloff

20.2 Health Systems and Policy

Discussions regarding access to and paying for healthcare in the United States are complex and politically charged. In fact, the topic of healthcare was a key point in the 2008 presidential election with one presidential debate between the two major candidates focusing on the question, “Is healthcare a right or a privilege?” As an example, the United States’ Congress has the power to enact certain entitlement programs such as Medicare and Medicaid. Medicare is health insurance for people aged 65 and over, people under 65 who have certain disabilities, and people of any age with end stage renal disease (such as a child on kidney dialysis). Medicaid is a means-tested health insurance for people who meet certain low-income standards. It is the largest source of funding for healthcare needs of those with limited financial resources. The United States government and each state jointly fund Medicaid. Each state manages its own Medicaid benefit, thus resulting in different available services across the country. In 1982 the United States Congress (legislative body) enacted the Hospice Medicare Benefit, making hospice care a reimbursable service under Medicare. In 1985 states were given the option to add the Hospice Medicaid benefit to its residents. If states chose to add the hospice Medicaid benefit, they were required to mimic the Medicare benefit with some allowable differences. Since 1985 Medicare statute changes have not included the mandate to reflect the same changes in Medicaid. It is important to understand the multifaceted ways in which children living in the United States can access healthcare. Children living in families with financial means typically have private insurance that pays for physician appointments, hospital care, medications, and other benefits such as some palliative care services and hospice care. Children living in poverty do not typically have private insurance. They rely on government assistance such as Medicaid, which often limits the type of care available. It is believed that at least 15% of children in the United States do not have access to any public or private health insurance [11]. The ability of each state to implement Medicaid according to state need greatly impacts access to hospice and palliative care across the country. One could argue that access to pediatric hospice and palliative care is predicated upon the region in which the child and family reside. This argument is based upon economics, political views of the states in each region, and geography. It is beyond the scope of this chapter to delve deeply into all of these particular nuances. Examples of access will be highlighted in several different sections of this chapter including healthcare policy, research barriers, and examples of pediatric hospice and palliative care programs across the United States. The United States has a long history of citizen initiatives making a positive impact. There have been several recent examples of grassroots efforts working toward change for pediatric hospice and palliative care. In 2000 the National Hospice and Palliative Care Organization (NHPCO) created the Children’s International Project on Palliative/Hospice Services, now known as the Children’s Project on Palliative/Hospice Services (ChiPPS). In the last 10 years ChiPPS has 20 Pediatric Palliative Care in the United States of America 361 been involved in several initiatives to advance pediatric palliative care. A 2001 white paper promoted the following steps to improve care:

• Interdisciplinary team care • Programs designed to meet the unique needs of children and their families • Settings of care to reﬂect all the different sites children receive care • Adequate training and education to be available to providers • Equitable reimbursement to ensure broad access to care [16].

ChiPPS has also developed training manuals for hospice programs that wish to establish a pediatric hospice and palliative care program and developed program standards for new programs; it sponsored conferences on pediatric hospice and palliative care, provided support to community coalitions, and worked closely with the United States government toward the enactment of legislative changes to healthcare laws. NHPCO made a commitment to ensure that its annual national Clinical Team Conference includes a pediatric intensive so that attendees have access to pediatric content throughout the conference. In 2003 a seminal report was published that provided the boost to this grassroots effort. This report is the direct result of the work of an interdisciplinary panel that took testimony from experts in the ﬁeld, including bereaved parents. The Institute of Medicine report, called When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families, outlined seven working principles essential to changing end of life care for children in the United States. These principles include:

• Assurances that care for children is interdisciplinary and developmentally appropriate • Care must involve and respect the child and family • Inclusion of family as part of the care team • Effective and compassionate care begins at diagnosis and continues through bereavement • Healthcare professions providing care must be properly educated in pediatric hospice and palliative care • Organizational and individual change is necessary in order to provide this level of care • Research must expand to include study in all aspects related to pediatric hospice and palliative care [5].

In 2000, the American Academy of Pediatrics (AAP) issued a position paper on pediatric palliative care. This, too, was a groundbreaking report that had much impact throughout the healthcare community. Included in the AAP report are recommendations for seamless care throughout the illness trajectory from one care setting to another, consistent caregivers, availability of the interdisciplinary team 24 h a day, 7 days a week [2]. Other professional groups and associations have also made strong commitments to increasing professional knowledge regarding pediatric hospice and palliative care. 362 S.F. Orloff

Their level of commitment has included things such as development of new professional resources and training programs, collaboration with other professional partners, and advocacy that includes working with state and federal government officials. In 1998 the Education Development Center (EDC) created a new endeavor called the Initiative for Pediatric Palliative Care (IPPC). Much work took place before the team created their finished product, an interdisciplinary curriculum and process to teach to the curriculum. Initially the team developed quality domains and indicators for pediatric palliative care. They worked closely with children’s hospitals utilizing a newly developed quality improvement tool. They also surveyed clinicians to determine knowledge of this field and lastly, and most importantly, interviewed bereaved parents. The final outcome of this development process was the creation of an interdisciplinary curriculum comprising five modalities and 26 learning activities that is predicated upon the equal participation of bereaved parents as co-participants along with healthcare professionals [18]. What was and continues to be so unique about the IPPC curriculum is the equal partnership between healthcare professionals and bereaved parents. The learning activities also support greater interaction between each small group participant and help the participants set goals for further actions once they return to their own work settings. A recently published article supports the positive impact attendance at IPPC retreats had on all participants, both while they were participating in the 1 2 /2 day retreat and once they returned to their respective work sites [18]. The End-of-Life Nursing Education Consortium (ELNEC) is another national curriculum developed to improve palliative care. This project, begun in February 2000, focuses on educating nurses in palliative care. It recently added a pediatric component. ELNEC is research-focused and has several outcome measures. Within the first decade, ELNEC trained over 10,070 nurses and other healthcare providers in all 50 states and 63 countries. Many health care professionals from across the United States as well as an advisory board were involved in creating ELNEC. The curriculum is updated based on research and best practice [9]. Many states in America have established their own coalitions and work with their state legislators toward establishing new state initiatives. These grassroots efforts have often been quite successful. Pennsylvania is one state that has had considerable success in developing a statewide coalition with the support of the state Department of Public Welfare and several Pennsylvania legislators. Pennsylvania’s model includes a partnership with bereaved parents and several local groups from cities across the state. This statewide coalition has sponsored workshops and is working toward three different initiatives [1]. In 1997 Children’s Hospice International (CHI) convened a focus group to discuss barriers that kept children from being admitted into hospice programs, particularly barriers that prevented families from accessing the Medicaid benefit. By 1999 this dedicated group of interdisciplinary healthcare providers, government representatives, and leaders from Children’s Hospice International had developed a new model of care called the CHI Program for All-inclusive Care for Children and their Families (PACC) [3]. In November of 1999, the United States Congress approved 20 Pediatric Palliative Care in the United States of America 363 a 1-year appropriation of funds for the CHI PACC model. In October of 2000, five states (Florida, Kentucky, New York, Utah, and Virginia) were selected to develop a demonstration model using Medicaid funds to provide palliative care to children who continued to receive curative care. In 2001, Colorado was selected as the sixth demonstration site. To date, each state has developed a different model of care. A few additional states in America have also worked with their state Medicaid offices to develop their own demonstration programs. What is remarkable about these demonstration programs is that children with life-limiting illnesses/conditions have been able to continue curative care and receive palliative care. Additionally, in some of the demonstration sites such as Florida and California, palliative care services extend to siblings and parents. This is a remarkable accomplishment, and there is much to be proud of. In 2010 the United States government passed the Affordable Care Act, which has the potential to revolutionize many aspects of our healthcare. Perhaps because of the positive impact of the demonstration sites and ongoing advocacy from many national organizations and grassroots efforts, this Affordable Care Act included a provision to extend concurrent care to children who also qualify for hospice care. What this means is that children who meet medical eligibility for hospice care and are on Medicaid can enroll in hospice and continue their curative care. Parents and children will no longer have to make a choice between receiving care that has the potential to cure and the valuable interdisciplinary palliative care offered by hospices.

20.3 Epidemiology

According to the 2005 Annual Summary of Vital Statistics, 53,552 children (aged 0–19) died. This figure represents 2.2% of all deaths that year. Just over 50% of all childhood deaths occur in infancy. Most of these deaths are due to congenital malformations and complications from low birth weight or complications of short gestation. Deaths of children ages 1–19 occurred from (in descending order): accidents, assaults, malignancies, suicide, congenital malformations/deformations, chromosomal anomalies, and heart disease [11]. Many of these events are due to a sudden event and would not necessarily qualify for hospice or palliative care. Some hospice and palliative care programs have begun to offer meaningful psychosocial and spiritual care to families whose children have died suddenly. This bereavement work is an important component of pediatric hospice and palliative care. According to a recent report from the National Hospice and Palliative Care Organization, one study published in 2001 estimated that 5,000 children living with complex chronic conditions would have qualified for hospice care, i.e. they were found to have a life expectancy of less than 6 months [6, 11]. A white paper published in 2001 by the Children’s International Project on Palliative/Hospice Services (now known by Children’s Project on Palliative/Hospice Services) stated that 8,600 364 S.F. Orloff children would be eligible for palliative care. The telling statistic, however, is that only 5,000 children out of a total of 53,000 children who died that year actually received hospice care [16]. Another important factor to consider is where children die in the United States. There are many factors involved in the decision-making process about where the child will die. The location of death is often very important to the child and family. Having your child die where you choose often impacts family outcome before the child’s death and certainly for their bereavement. For many, home is always the best place to die. This can be a significant issue as many parents and children feel these conversations do not consistently occur during the late phases of a child’s life. Feudtner et al. found that race and ethnicity, geographic area of the child’s home, and income level impact the likelihood of a child dying at home. This study looked at all death data from 1989 through 2003. Out of the 896,509 children who died during this time period, 22.1% (198,160) of these deaths could be attributed to complex chronic conditions. Out of this sub-group, 82% of the children died in the hospital and 15% died at home. Home deaths did increase over time. Keep in mind, though, that poorer, black and Hispanic children are more likely to die in a hospital [10]. Another study reviewed parental opportunity to plan a location of death. This study found that most parents who were able to plan for their child’s death did choose for their child to die at home. Additionally children whose parents who were able to plan tended to have less invasive care close to the end of their lives. Parents also expressed less regret about their care choices [8]. To best understand this statistical analysis it is important to keep in mind the following points. The category of child may be defined differently depending on the source tracking the data. Some statistical sources may consider children to be anyone under age 18, other sources may keep statistics up to and including age 21, and other categories may combine ages 21–24.

20.4 Overview of Need

It is difficult to determine the exact number of children in the United States who have received pediatric hospice or palliative care as there is not one standardized process or one site to gain this information. Hospices and children’s hospitals may be the largest providers of pediatric hospice and palliative care, but they are not the only healthcare providers, thus making statistical analysis challenging. Even more difficult is to determine how many children in the United States are eligible for this type of care. This is due to many reasons. Some programs describe eligibility based on life-limiting diagnoses or conditions; others deal with life-threatening illnesses/conditions; and yet others treat children with complex chronic conditions. Eligibility may also vary by age. Some programs will only admit children to a pediatric service until age 18; other programs may include anyone through age 21; and some programs may treat young adults who were children when first diagnosed with a pediatric illness/condition and are still receiving care at a children’s hospital. 20 Pediatric Palliative Care in the United States of America 365

Children often have very different diagnoses than adults admitted into hospice care. Some studies show that less than 20% of children with end stage cancer are admitted into a hospice program. Most admitted children have diagnoses such as pulmonary disease, congenital anomalies, and progressive neurological and metabolic disorders. These disorders usually require care for longer periods of time, particularly as children progress through various stages of care needs [6]. The Association for Children with Life–Threatening and Terminal Conditions and their families and the Royal College of Pediatrics and Child Health have iden- tiﬁed four useful categories for admission into a hospice or palliative care program. They are:

• Diseases that may be curable but care has not been successful for the child • Cancer, irreversible organ failure (e.g. heart, kidney, liver) • Diseases where cure may not be available but therapies may prolong life • Cystic ﬁbrosis, Muscular Dystrophy • Diseases without cure or even disease-modifying treatments • Batten’s Disease, Mucopolysaccharidosis • Disease that itself may not be progressive but symptoms from that disease are life-limiting • Severe multiple disabilities such as following brain or spinal cord injuries including some children with severe cerebral palsy [6].

Even more difficult, there is often disagreement about which diagnoses or conditions are considered life-threatening. Cancer is the most researched childhood disease, so it is much easier for oncologists to prognosticate and make referrals for hospice and palliative care. There is far less research conducted on the more rare disorders, so prognosticating and knowing when to refer for hospice or palliative care is much more difficult. The difficulty to prognosticate life expectancy often negatively impacts access to care [6]. Many hospice and palliative care programs would like to consider using admission criteria to include children with illnesses or conditions that are not expected to live to adulthood. Indeed some of the demonstration programs previously described in this chapter have done just that. It is often difficult to identify eligibility because children often have a wide range of diagnoses, many of which are quite rare and as such difficult to prognosticate. Some variability in eligibility is due to the payer. In the United States, program eligibility and payment for hospice care are often contingent upon the other. Smaller hospice programs cannot often afford to admit a child into their hospice or palliative care program without confirmation that a payer source exists to cover the expenses related to care. Federal guidelines limit hospice care to the final 6 months of life. State Medicaid requirements may vary from the final 6–12 months of life. Insurance 366 S.F. Orloff providers may not always limit eligibility by life expectancy. They often put a maximum cap of how much they will pay for the hospice benefit. Given this, it is easy to understand the power that payers have. Medicaid, as an example, frequently defines childhood eligibility until the age of 21; although because of the ability of each state to set their own Medicaid coverage, this may not be true in all 50 states. The lack of uniformity in age qualifications can make it difficult to bridge care between a pediatric hospice program and the adult program. Eligibility and funding sources are often different for children and adults in hospice or palliative care, thus creating challenges during transitional care. Different private insurance providers may also vary in coverage eligibility. Recent changes to healthcare regulations now require insurers to allow parents to maintain their children on their insurance plan until age 26. Payers may also limit the amount of money they will pay for the hospice benefit thus limiting reimbursement for care that may be required for longer than the payer is willing/able to pay. As an example, many private insurance companies’ hospice benefit limits reimbursement to a certain dollar amount. This total dollar amount is expected to cover all expenses associated with end of life care given by the hospice. It is not usual to have a child admitted into the hospice benefit whose care far exceeds the total reimbursement provided by the insurance provider. The hospice must then find other ways (usually through charitable donations) to cover these costs. It is easy to understand why many smaller hospice programs in the United States struggle financially to provide care to terminally ill children even at a time when great emphasis is placed on increasing pediatric hospice and palliative care. Until reimbursement changes, many smaller hospice and palliative care programs will not have the necessary resources to provide care to children and their families.

20.5 Care Settings

Hospice or palliative care services can be provided in multiple settings. Care settings include hospital, home and community based hospice, hospice houses (free standing or part of a hospice program), and other community based long-term care setting such as a pediatric nursing home. Each setting offers some unique features from the other. Care is predicated upon a core value that the patient/family is always in the center of care and should be given options about care choices. In the best of situations, the child and family should be able to transition from one care setting to the other with minimal interruption in care. Of course, some medical treatments may not be available in every care setting. All settings must consider the other spheres of inﬂuence for the child and family and how they will collaborate with together. Keeping in mind that the child and family are in the center of all care, each care setting described below must ﬁnd ways to work with the child’s school, daycare, faith community, and service groups. Each of these settings might also have their own restrictions on care. Although schools are required to meet the needs of special needs students, they often struggle when 20 Pediatric Palliative Care in the United States of America 367 it comes time to honor the wishes of seriously ill children. As an example, many school districts will not honor a student’s advance directives including a Do Not Resuscitate Order (DNRO). A recent article from the state of Iowa highlights this issue. Iowa is not the only state in the country with this problem [12].

20.5.1 Hospital Based Programs

Most children’s hospitals utilize a consultative model when providing palliative care. The consultative practice may include a variety of staff positions including physician, nurse, social worker, nurse practitioner, child life specialist, psychologist, etc. Other staff may include pharmacists and dieticians. The hospital consultative team treats children after receiving a consult order and works collaboratively with other hospital staff. Most of the major children’s hospitals in the United States currently offer palliative care consults [7, 13, 17]. Children’s hospitals may have designated palliative care or hospice beds within their hospital. These specialized units might be staffed by hospital employees or in collaboration with a local hospice program. Children may move into these specialized units for symptom management or for end-of-life care. There are many more examples of these types of units in adult hospitals; children’s hospitals are slowly working toward this. Some children’s hospitals have a designated room where a child may move toward the end of his/her life. These rooms are designed to provide a more home-like atmosphere for children who are dying and who may not be discharged from the hospital (for whatever the reason). Family members are able to stay in the room 24 h a day. The room also offers many home-like features such as TV, video games, snacks, beds for family members to sleep, and quiet space. The rooms are also remarkable for what they do not have. Most medical equipment and monitoring devices are either non-existent or well tucked away. Nursing staff do not go in regularly to take the child’s vital signs or monitor other signs such as heart rate or blood pressure. Hospitals may also provide palliative care through an out-patient setting. The outpatient services may be a wholly own division of the hospital or may be operated as a partnership with a local community based hospice. The hospital may choose to offer palliative care services as part of their regular out-patient clinic. There are many opportunities for creative partnerships in providing services to children and their families.

20.5.2 Home Based Hospice and Palliative Care

As previously stated in this chapter, many home based hospice and palliative care providers extend their care to children and their families. In order for children to receive hospice services at home, it is important that at least one parent or caregiver is willing and able to provide care to the child; the hospice has staff competent 368 S.F. Orloff in providing care to the ill child and family; and this care, particularly nursing care, is available 24 h a day, 7 days a week [6]. Additionally, the hospice provider must be able to coordinate care with all other sites the child interacts with such as school, faith communities, and social groups. Most hospices offer emergency kits for all their hospice patients (adults and children), so that emergent needs can be attended to. In 2007 the National Hospice and Palliative Care Association (NHPCO) conducted a follow up survey of pediatric services to member hospices. 378 hospices responded to the survey. 78% of respondents reported they served pediatric patients. 36.6% claimed to have an established formal pediatric program. Almost 65% of responding hospices stated they provided hospice care for up to 20 children annually. Less than 5% cared for 21–100 children annually. 23% responding hospices provided palliative care for up to 20 children annually and 6% provided palliative care for 21–100 children annually. There is fairly equal distribution of age ranges cared for by the responding hospice providers [11]. Most hospice providers care for a disproportionate number of adults as compared to children. This is not surprising given the previous discussion about epidemiology and need. In order to provide care to terminally ill children, most hospice providers ensure their staff is dually trained to provide care to children and adults. Some of the larger hospices, with larger pediatric programs, are able to hire specialized pediatric trained staff to only care for children. The decisions about how to staff are usually based on census.

20.5.3 Hospice Houses

Some hospices offer residential and in-patient levels of care in their own hospice houses. There, children who might otherwise have to return to the hospital can have their pain and symptom management issues addressed. Hospice houses are typically quite similar to the end-of-life rooms, discussed in the previous section, offered by some children’s hospitals. The hospice house may integrate children throughout the house or may choose to designate particular rooms or a wing of the house for children.

20.5.4 Other Community Based Long-Term Care Facilities

In some communities across the United States, children with complex chronic conditions needing palliative or end-of-life care may be cared for in skilled nursing facilities. This may be the only option in some areas of the country as the community may not have any other provider of hospice or palliative care. This option may also be chosen by a parent or caregiver when the child’s care needs exceed what the parent/caregiver can provide in the home. This is becoming more of an issue with parents who have children later in life and are aging and unable to meet the physical care needs of providing long term care to these children. 20 Pediatric Palliative Care in the United States of America 369

20.6 Available Services

Palliative care is not regulated like hospice care, so there may be wide variety in the kind of care provided. Many palliative care programs focus primarily on the physical care of the child. This would include care from physicians, nurses, nurse practitioners, and pharmacists. These disciplines ensure the child is free from pain and other distressing symptoms. They may also meet with the child (depending on age) and parents to assist with decision-making. This team is often quite helpful in addressing parental and child concerns and questions regarding treatment options. Particularly in the hospital, this attention to treatment options often helps the family to choose to stop treatment that is not within the goals of care. Palliative care also extends to the psychosocial and spiritual needs of the child and family. Staff who may provide assistance include social workers, child life specialists, and pastoral care counselors/chaplains. These staff attend to the emotional, psychological, and spiritual needs of the ill child and extended family. They may provide their care by utilizing expressive arts such as art, movement, and music. Children often respond best to non-talking therapies, and these practitioners are typically well trained to provide these kinds of therapies. Additional services may include support groups for the ill child, siblings, parents/caregivers, grandparents, and others. These support groups may be facilitated by any of the above-mentioned staff or volunteers. Hospice care is much more closely regulated, so services are much better defined. Hospice team members include a physician, nurse, medical social worker, spiritual/pastoral counselor, home health aide, therapist (speech, occupational, physical), bereavement counselor, and volunteer. In addition to these team members, many hospices provide their own Durable Medical Equipment (DME) and pharmacy. They may contract with other DME companies and pharmacies for the times when they are unable to meet patient need. The hospice team works with the patient and family to develop the plan of care. The team is responsible for managing the child’s pain and other symptoms, attending to the psychosocial and spiritual needs of all family members, providing short term respite if the caregivers need assistance, and ensuring the bereavement needs of surviving family members are met. Hospices offer four different levels of care. Routine home care is offered when the ill person is cared for in the home by family with assistance from the hospice team. Continuous care is provided when the ill child develops physical or emotional symptoms that are not as easily managed with routine home care. Continuous care is offered by a nurse or home health aide for a minimum of 8 h and a maximum of 24 h a day. The need for continuous care is evaluated every 24 h to ensure this level of care is still needed. General inpatient care is available for patients whose symptoms are so severe they need inpatient level of care. In-patient care can be provided at a hospice house, hospital, or long-term care facility. Respite care is offered when the family is having a difficult managing the patient’s increased care needs. This is a short-term benefit, usually provided by moving the patient into a long-term care facility or hospice house for up to 5 days. 370 S.F. Orloff

Services offered by hospices and palliative care providers may be very similar. The goals of care and disease trajectory are what may be different. Both hospice and palliative care offer the highest level of pain and symptom management, provide support groups using different modalities, and meet the psychosocial and spiritual needs of the child and family. Some hospice and palliative care providers offer Complimentary Alternative Medicine (CAM) or palliative arts such as aro- matherapy, massage, acupuncture, pet therapy, energy works (Reiki), and expressive arts. Palliative care programs may not provide volunteer services or bereavement follow up. All team members, regardless of whether or not they are providing hospice or palliative care, must be well trained in child development and understand interdisciplinary care. They must understand the varied and, often, rare conditions children have. The team must be ﬂexible and able to meet the needs of all family members. This might mean being available in non-traditional hours, particularly in the evening when parents are home from work. Today’s family may also be coping with other signiﬁcant issues such as poverty, multi-generational issues, and drug abuse. Hospice and palliative care teams must be aware of these societal issues. All team members must be clear about their own professional boundaries and work hard to ensure that they provide support to the family and not displace the family in providing care [6].

20.7 Research Efforts

Several major reports over the last decade have noted that research demands for palliative care have not kept up with societal and clinical needs for services. As a country we may have improved access to clinical services for those in need of palliative care, but we have not done as much to ensure that our research agenda has focused on similar efforts. Findings from both the Institute of Medicine and the National Institute of Nursing Research have found fault in current research to support the practice of palliative care [9]. The professional pediatric hospice and palliative care community has often strug- gled to determine what the primary areas of research study should be. As an example, do we study outcome measurement, clinical interventions, pharmaceutical trials, psychosocial and spiritual concerns, ethics, or issues related to life expectancy and knowledge about the very rare and often fatal disorders we know little about? Or are there other important research questions to consider? Should research be quantitative only, qualitative focused, or a combination of each? Questions such as these often make it difficult for a true research agenda to be developed. It is also sometimes difficult to obtain the necessary funds to conduct research on these topics. Other researchers have focused on health costs and quality of life [14]. Knapp and Madden noted that the 2009 American Recovery and Reinvestment Act (Public Law 111-5) encourages research in, “identifying procedures, medications, programs, and 20 Pediatric Palliative Care in the United States of America 371 technologies, which are cost-and clinically effective.” (p. 277) Most information on the cost of caring for children at the end of their life is focused on hospitalizations. Although one may assume that home care is less expensive than hospital care, little research has been conducted to prove that point. Knapp and Madden conducted two studies in 2009, using Medicaid data. They studied health care expenditures including hospice and the location of death of low-income children in Florida. They found that in the last 12 months of their lives 5% of infants and 18% of children died using hospice services. As with previous studies, most of the pediatric hospice users died from complex chronic conditions (90%). Most non-hospice users died in hospitals. 55% of hospice users died at home [14]. Conducting pediatric palliative care research can be somewhat challenging and special consideration must be made for things such as how to conduct randomized controlled studies and issues of informed consent with minors. It can be difficult to develop an interview guide that may be used with both younger children and adolescents. Ethics are also important and special consideration must be made given the age and developmental level of these children. Many healthcare and legal professionals question the decision-making capacity of children of certain ages. Some funders do not want to give money for a study that will have a small sample size [6]. As previously emphasized in this chapter, it is important to expand research to include the more rare disorders that children are diagnosed with. Without such study, we will not be able to develop the sustained programs and services children with these disorders and their family members need. The good news is research efforts are increasing. Beginning in 1997 and continuing to the present, the National Institute for Nursing Research, under the auspices of the US National Institutes of Health, identified specific areas of priority research for pediatric palliative care. Most current research continues to be conducted in university or academic hospital settings. It is rare for a university or academic hospital to partner with a home or community based hospice provider [6]. A few of the larger hospice providers in the country have developed their own research consortiums; however, little research is focused on pediatric hospice or palliative care. This is an exciting time with great opportunities to expand pediatric hospice and palliative care research.

20.8 Highlights of Programs

Much information has been discussed about the United States’ hospice and palliative care delivery system. The following program examples are shared in order to better understand this complex system. The first program operates in a large urban area in Florida that serves one county and highlights how a robust pediatric program can provide services to a contained geographic area. The second program highlights the challenge of providing pediatric hospice and palliative care in a rural area in Kentucky that serves 32 counties. Since 1977, Suncoast Hospice has been serving Pinellas County, Florida families who are touched by serious illness or the loss of a loved one. Suncoast Hospice 372 S.F. Orloff is private, not-for-profit, and Medicare and Medicaid certified, and it is an active member of the National Hospice and Palliative Care Association. The mission of Suncoast Hospice is to provide dignified quality comfort care to enhance the lives of dying people and their families and to assure the long-term well being of survivors after loss. Suncoast Hospice grew out of a grassroots commitment to improve the way people die in Pinellas County. In the past 30 years, it has grown from a small organization of a few dedicated volunteers to one of the largest non-profit hospices in the country and a national leader in the hospice movement. The Stepping Stones Program is the pediatric program of Suncoast Hospice. Begun in 1983 and originally known as the Child and Family Support Program, this multi-focused program provides services to children and families, beginning with perinatal loss through the death of a child at age 21. While many hospice programs limit their services to families with a dying child, Suncoast Hospice offers a full continuum of care for children and their families who are affected by serious illness and loss of life. This is accomplished through a range of programs that care for and comfort ill and bereaved children and help them make meaning of their experience. This description will focus primarily on programs and services available to families with ill children. Services are available beginning at the time of diagnosis, through active treatment, and bereavement. Each of these programs and services will be addressed below. The Stepping Stones team is composed of pediatric registered nurses, pediatric social workers, a pediatric medical director, team director, home health aides, chaplain, volunteers, and licensed practical nurses. Stepping Stones staff provides all of the services described below. Stepping Stones palliative care programs offer counseling to families with children who are newly diagnosed with an illness or condition that may be life limiting. These children may be in active treatment and can self refer to the Stepping Stones program for counseling. Individual and family counseling services are available to all family members including parents, grandparents, siblings, and other significant people as identified by the family. Counseling can be provided in the family home, at the children’s school, a hospice service center, or any other location requested by the family. Volunteer services are also offered to families as well as spiritual care support. These palliative care services are paid for through family donations and grant and foundation support. Partners in Care: Together for Kids (PIC:TFK) is Stepping Stones’ Medicaid demonstration program that is part of the State of Florida’s demonstration program. PIC:TFK is the Medicaid program previously described in this chapter. Children are referred for palliative care while continuing to receive their curative care. The PIC:TFK program offers individual, family, and group counseling for the ill child, siblings, and parents; pain consults; nursing consultation; personal care; respite; and expressive therapies. Children are annually certified by their attending physician that they continue to have a life-limiting illness/condition and that they are not expected to live to age 21 (when their Medicaid benefit ends). Medicaid pays for the services offered through the PIC:TFK program as part of the state Medicaid demonstration program. 20 Pediatric Palliative Care in the United States of America 373

Suncoast Hospice offers the full range of interdisciplinary hospice care to children who meet Florida Medicaid eligibility for hospice care. They receive care from a full time pediatric hospice team that includes a pediatric medical director, nurses, social workers, chaplains, home health aides, and volunteers. This team manages all aspects of their hospice care, including the provision of DME and pharmaceuticals. Children receiving hospice care have made the choice to receive comfort care for their symptoms related to their end stage diagnosis. This same team continues to provide bereavement support to the family after the child dies. Bereavement care is offered for a minimum of 13 months after the child’s death. The Stepping Stones team works closely with the local children’s hospital. This collaboration includes transitional care from hospital admission and discharge to hospice referral and admission. The Stepping Stones team visits children daily when they’re hospitalized. Stepping Stones’ robust palliative care program also provides services to bereaved families. Families may call the Stepping Stones team for bereavement counseling, even when their child did not die in the hospice program. Many of these children may have died from a short-term illness or sudden event, including traumatic events such as murder, suicide, or drug overdose. Individual and family counseling services are provided in the family home, hospice service center, school, or any other location requested by the family. These palliative care services are paid for through family donations and grant and foundation support. Along these same lines, Stepping Stones responds to crises in its service area that impact children. As an example, a school may contact Stepping Stones if a student dies suddenly. A faith community may reach out to Stepping Stones for assistance when a child from its congregation dies. These short-term crisis interventions are very beneficial to the organizations that request them. These services are provided to the requested organizations as a community service. Many organizations make donations to Suncoast Hospice in appreciation for the services received. In addition to the counseling and hospice services described, Stepping Stones offers a full range of retreats and special events. Since the early 1980s, Suncoast Hospice has offered a children’s bereavement camp. Originally called Camp Triple L, now Camp Erin, this bereavement camp is a weekend retreat for children ages eight to 16. Camp Erin offers bereavement groups, fun activities, opportunities to engage in therapeutic play, and a camp-wide memorial service. Camp Hope (Honoring Our Personal Experiences) is a weekend bereavement camp for families. Together families learn how to begin their healing process by attending bereavement groups together and in separate adult and children’s groups, participate in recreational activities and attend a memorial service. Suncoast Hospice has offered Camp Hope for over 15 years. CUBE (Caring, Understanding, Believing, Empowering) is a day retreat for bereaved adolescents. Camp LOL (Laugh Out Loud) is a daylong bereavement retreat for children aged six to 12. These retreats are designed for children who may not be able to attend a full weekend away from home. Kidshop is a workshop designed for siblings of ill children. These siblings are often referred to as “the forgotten children” since their sick sibling typically receives most of the attention. Kidshop is a daylong retreat for children six to 13 years old who have someone 374 S.F. Orloff currently in their home diagnosed with a serious illness. The children engage in both therapeutic and fun activities designed to make the child feel special for the day. Caring for a seriously ill child is more than a full time job. Parents must juggle everything related to care of the ill child: doctor appointments, hospitalizations, as well as managing all other aspects of their family and personal life. Helping families to take a break is important. In order to do that, Stepping Stones offers Family Fun Day. Family Fun Day is an evening of fun and relaxation for families with seriously ill children. All of these retreats have a registration fee which helps to offset some cost. Grants and foundation support provide additional financial support. Daniel’s Care, the pediatric program of Hospice of the Bluegrass (HOB), provides palliative and end-of-life care to infants, children, and adolescents with life-limiting illnesses along with bereavement counseling and support for families. HOB is a private non-profit organization governed by a Board of Directors. The program is a member of the National Hospice and Palliative Care Organization, is certified by Medicare and Medicaid, is licensed by the State of Kentucky and accredited by the Joint Commission on Accreditation of Healthcare Organizations. HOB serves more than 1,000 patients daily in 32 central, southeastern, and northern Kentucky counties. The first specialized pediatric team was formed in 1997 due to an increase in pediatric referrals and conversations with specialists at Kentucky Children’s Hospital. Existing staff was asked to self-select to assist this program. They received cross-training in pediatric hospice and palliative care. HOB serves both an urban and rural area, making it necessary to have trained staff available at each of the seven sites to provide care for pediatric patients. Due to geographic area and fluctuation in census most teams serve both pediatric and adult patients. The team’s census may vary based on the number of adult and pediatric patients, patient acuity level, and travel. Each patient receives the care of a nurse, social worker, chaplain, Certified Nursing Assistant, bereavement counselor, and volunteer. Patients eligible for the Daniel’s Care traditional hospice program are diagnosed with a life-threatening illness/condition, which could result in death in 6 months or less if the disease progresses as expected. Children in this program are not required to forgo aggressive treatment. Medicaid and most private insurances reimburse for hospice care. However, because childhood diseases/conditions are more difficult to prognosticate and often do not fit into the 6 month or less criteria, parents of pediatric patients often access other Medicaid programs, and this at times results in providing services to this population without seeking reimbursement. Since the implementation of the Kentucky Medicaid Concurrent Care provision, it is possible for Medicaid to reimburse Hospice and other providers for aggressive care concurrently. The palliative care consultation service, known as Daniel’s Care Palliative Care (DCPC) was formalized in 2009. DCPC is appropriate for patients whose life threatening conditions have stabilized and/or for patients in the early part of their diagnosis. A child or adolescent from birth to age 21 diagnosed with a life-threatening illness is appropriate for palliative care when they have difficult symptom management issues such as dietary needs/eating concerns, seizures, pain, weakness and fatigue, respiratory problems, and infections. The DCPC team works 20 Pediatric Palliative Care in the United States of America 375 with the child’s physician to coordinate and provide physician visits. Nurse practitioners visit to monitor and manage symptoms, provide case management, and assist with links to resources and counseling. Children in the DCPC program have access to a physician, nurse practitioner, nurse case manager, and social worker. Services are offered in a clinic setting (in Lexington, Kentucky) or in the home. Visit frequency is based on patient need. Some patients may be seen monthly while others are seen every 4–6 months. Patients are contacted by the nurse case manager on a monthly basis. The growth of the program, from 16 patients in 2009 to 73 patients in 2010, has exceeded expectations. HOB is part of a Palliative Care Team at University of Kentucky’s Chandler Medical Center and Kentucky Children’s Hospital. Through this partnership, HOB has the unique opportunity to follow both Daniel’s Care Hospice and DCPC patients when they are admitted to the hospital and are receiving acute care. The partnership insures continuity of care for patients and families. Daniel’s Care staff has a close working relationship with the Palliative Care Team at Cincinnati Children’s hospital and collaborates with them when Daniel’s Care and DCPC patients are seen at this facility. Caring for children in a large geographic area is very challenging. As mentioned previously HOB has a service area that covers 32 counties that are both urban and rural. There is a disparity of services available between the urban and rural areas. The urban areas have access to children’s hospitals and respite care providers, and families have a greater choice of physicians and agencies providing pediatric services. Parents in rural areas must drive very far in order to access pediatric specialists. Rural areas have far fewer pediatric providers, thus creating a lack of services available to pediatric patients. For example, children living in Eastern Kentucky may not get therapy in their homes, not because they do not qualify, but because there is no pediatric therapist available. In addition, there is a high unemployment rate in some of the rural areas, posing both economic challenges to the families and to the hospice and palliative care staff caring for patients and families. Through HOB bereavement programs, family members are also offered support after a death. Families have access to support groups, holiday programs, individual counseling, and children’s grief camps. In 2010, 117 children received traditional, end of life care from the Daniel’s Care teams, and the palliative care team followed 73 children. Some children were cared for by both the hospice and palliative teams. Daniel’s Care is an unfunded program. HOB is committed to providing excellent pediatric care and often provides technical and symptom management training across the state of Kentucky.

References

1. Ahmann E, Dokken D (2010) Pediatric palliative and hospice care: Pennsylvania’s model of collaboration. Pediatr Nurs 36(1):61–67 2. American Academy of Pediatrics (Committee on Bioethics and Committee on Hospital Care) (2000) Palliative care for children. Pediatrics 106:351–357 3. Armstrong-Dailey A, Zarbock S, Brenner P (2002) PACC Implementation Manual. Alexandria, Virginia 376 S.F. Orloff

4. Coffman JE, Sullivan TA (1992) United States. In: World book 20. World Book, Chicago, pp 90–127 5. Field MJ, Behrman RE (eds) (2003) When children die: improving palliative and end-of-life care for children and their families. National Academies Press, Washington, DC 6. Davies B, Siden H (2010) Children in palliative medicine: an overview. In: Hanks G, Cherny N, Christakis N, Fallon M, Kaasa S, Portenoy R (eds) Oxford textbook of palliative medicine, 4th edn. Oxford University Press, New York, NY, pp 1301–1317 7. Duncan J, Spengler E, Wolfe J (2007) Providing pediatric palliative care: PACT in action. MCN Am J Matern Child Nurs 32(5):279–287 8. Dussel V, Kreichergs U, Hilden JM, Watterson J, Moore C, Turner BG, Weeks JC, Wolfe J (2009) Looking beyond where children die: determinants and effects of planning a child’s location of death. J Pain Symptom Manage 37(1):33–43 9. Ferrell B (2010) Palliative care research: nursing response to emergent society needs. NSQ 23(3):221–225 10. Feudtner C, Feinstein J, Satchell M, Zhao H, Kang T (2007) Shifting place of death among children with complex chronic conditions in the United States. 1989–2003. J Am Med Assoc 297(24):2725–2732 11. Friebert S (2009) NHPCO facts and ﬁgures: pediatric palliative and hospice care in America. National Hospice and Palliative Care Organization, Alexandria, VA 12. Gao G (2011) Iowa law leaves terminally ill children little choice on where to die. In: Iowa Independant http://iowaindependent.com/49992/iowa-law-leaves-terminally-ill- children-little-choice-on-where-to-die. Accessed 23 Jan 2011 13. Hubble RA, Ward-Smith P, Christenson K, Hutto CJ, Korphage RM, Hubble CL (2009) Implementation of a palliative care team in a pediatric hospital. J Pediatr Health Care 23(2):126–131 14. Knapp C, Madden V (2010) Conducting outcomes research in pediatric palliative care. Am J Hosp Palliat Care 27(4):277–281 15. Largest Geography. http://geography.about.com/cs/worldpopulation/a/mostpopulous.htm. Accessed 8 Jan 2011 16. National Hospice and Palliative Care Organization (2001) ChiPPS White Paper: a call to change: recommendations to improve the care of children living with life-threatening conditions. October 2001 17. Nelson JE, Bassett R, Boss RD, Brasel KJ, Campbell ML, Cortez TB, Curtis JR, Lustbader DR, Mulkerin C, Puntillo KA, Ray DE, Weissman DE (2010) Models for structuring a clinical initiative to enhance palliative care in the intensive care unit: a report from the IPAL-ICU Project. Crit Care Med 38(9):1765–1772 18. Solomon MZ, Browning DM, Dokken DL, Merriman MP, Rushton CH (2010) Learning that leads to action: impact and characteristics of a professional education approach to improve the care of critically ill children and their families. Arch Pediatr Adolesc Med 164(4):315–322 19. United States census data. www.cenus.gov. Accessed 8 Jan 2011 Part VI Oceania Chapter 21 Paediatric Palliative Care in Australia and New Zealand

Jenny Hynson and Ross Drake

Abstract This chapter explores the provision of palliative care in Australia and New Zealand. Models of care, their evolution and their relationships with other services are described and examples of specialist services provided. The nature of the patient population is explored in some detail. The chapter also details key initiatives in paediatric palliative care within the domains of education and training, policy development and quality projects. Bioethics and its importance to the provision of paediatric palliative care is highlighted. The chapter includes an honest appraisal of the particular challenges faced in the two countries.

Keywords Australia · New Zealand · Paediatric · Palliative care · Bioethics · Model · Quality · Policy · Education · Neurodegenerative

21.1 Australia

21.1.1 Introduction

Australia has often been described as the ‘lucky country’. A large island continent comprised of six states and two territories, it boasts one of the highest standards of living in the world. Although the land area is a massive 7,619,000 square kilometres, the population is relatively small at 22 million [1]. More than 60% of the population is centered in and around the state capital cities. This is largely because much of the land is desert or semi-arid. Although Australia is a developed country and is the 18th largest economy in the world, it was only settled by white colonists in the late 18th century [2]. Until that time, an indigenous population had occupied the country for thousands of years. This group now comprises only 2.4% of the total population and struggles with higher rates of unemployment, a lower life expectancy and poorer health than the non-indigenous population [3]. The majority of Australians are of European descent but the country has worked actively toward multiculturalism since

J. Hynson (B) Victorian Paediatric Palliative Care Program, Royal Children’s Hospital Melbourne, Parkville, VIC 3052, Australia e-mail: [email protected]

C. Knapp et al. (eds.), Pediatric Palliative Care: Global Perspectives, 379 DOI 10.1007/978-94-007-2570-6_21, C Springer Science+Business Media B.V. 2012 380 J. Hynson and R. Drake the 1970s and individuals from varied backgrounds are now represented in the population. Many of these individuals have emigrated from Asian nations. A member of the Commonwealth, Australia is a constitutional monarchy and federal parliamentary democracy. Although a wide variety of religions are practiced, more than half of the population identify themselves as Christian. Health care is provided by government (both state and federal) and private organizations. A 1.5% income tax levy is used to fund a health care system known as Medicare which allows all Australians to access high quality inpatient care at no personal cost. Outpatient medical services are heavily subsidized. In addition, the cost of medications is subsidized by the Pharmaceutical Beneﬁts Scheme. Many Australians also have private health insurance to cover the cost of treatment not covered by Medicare or to help them access treatment more quickly where waiting lists exist in the public system. Nearly all children with serious illnesses are managed in the public sector.

21.1.2 The Patient Population

There are approximately 4 million children aged 15 years and under in Australia [4]. The infant mortality rate is about 5 per 1,000 live births although this figure is almost three times as high in the indigenous population. The child mortality rate has been steadily declining and in 2006 was 15 per 100,000 children [4]. In the same period, the mortality rate among indigenous children was 39 per 100,000 children [4]. It is difficult to know how many Australian children require palliative care. Individual services record how many referrals are received each year but the extent to which this is indicative of the population of children who could potentially benefit is unknown. This is because not all children are referred. There are a number of reasons for this. The most common is that the treating healthcare team does not have a full understanding of palliative care and therefore does not consider the child to have palliative care needs. Alternatively, the team identifies the child as having palliative care needs but believes they are best met by the staff currently treating the child and that the involvement of a specialist palliative care team is not necessary. Finally, a referral may be suggested but the family may decline. Few referrals are received from neonatal intensive care units. This may reflect the acuity with which events unfold in this setting and the increased confidence and capacity of staff in such units who encounter death more frequently than those working in other areas. As in many other countries, there is an absence of representative epidemiological data to guide those responsible for planning services in paediatric palliative care [5, 6]. As a result, mortality statistics are often relied on to make inferences. These are of limited value however, as they are dependent on the accuracy with which data are entered regarding causation. They also provide little information about the circumstances of any individual child’s death and the extent to which that death could have been anticipated and therefore amenable to palliative interventions. For example, a child whose death is attributed to drowning may have died suddenly, in which 21 Paediatric Palliative Care in Australia and New Zealand 381 case there would have been little opportunity to provide palliative care. In the case where a child died after a protracted period of illness, disability and vulnerability, palliative care may have been appropriate. Similarly, little can be determined about the extent to which palliative care may have been useful in circumstances where a death is attributed to a cardiac anomaly. Did the child have a readily correctable abnormality and die unexpectedly during surgery or was the malformation major and associated with only a small chance of survival? Mortality data are also unable to provide information about the number of children living with a life-limiting condition at any given point in time and who may benefit from palliative care in the future. Despite these limitations, mortality data can reveal something about the life- limiting illnesses that affect children. In the state of Victoria, a government body has been established to collate data relating to paediatric and obstetric mortality. The Consultative Council on Obstetric and Paediatric Mortality and Morbidity (CCOPMM) publishes a detailed report containing this information on an annual basis [7]. Causes of death are grouped into broad categories such as ‘conditions determined at birth’ and ‘genetic conditions’. Only an estimate can be made regarding the extent to which palliative care may have been appropriate within any given diagnostic group. Data concerning cases in which palliative care may have been appropriate in 2005 are summarized in Table 21.1. These have been obtained by examining the mortality data provided by CCOPMM and excluding conditions where it is unlikely that death could have been anticipated (e.g., Sudden Infant Death Syndrome or accidental death). Conditions in which death may have been anticipated accounted for an estimated 327 (73%) of a total of 447 paediatric deaths (Table 21.1). Deaths of children aged less than 1 year accounted for a greater proportion of child deaths than all of the other age groups combined. Congenital anomalies, genetic conditions, other conditions determined at birth and malignancies were common causes of death. In the 12 months from the end of June 2005, 116 patients were identified by or referred to the specialist paediatric service in Victoria [8]. Children with non- malignant conditions such as neurodegenerative disorders, congenital anomalies and genetic conditions comprised more than half this group. In summary, in Australia:

• The number of children living with and dying from life-limiting conditions is not insubstantial although the exact size of this population remains unknown, • The patient population is diverse in terms of the conditions affecting children, • Children with non-malignant conditions account for the majority of those in need of palliative care. This group is comprised of a number of individually rare conditions, many of which ﬁt into broad categories such as ‘neurodegenerative conditions’ and ‘congenital anomalies’, • A substantial proportion of children who need palliative care die in the neonatal period or in the ﬁrst year of life, • Specialist paediatric palliative care services are accessed by only a fraction of the population of children potentially in need of palliative care. 382 J. Hynson and R. Drake

Table 21.1 Mortality data for infants and children where Neonates (0–28 days) death may have been Prematurity 88 anticipated [7] Congenital anomalies 84 Hypoxic ischaemia encephalopathy 20 Total 192 Infants (29 days–1 year) Birth defects, genetic conditions 32 Conditions determined at birth 17 Malignancy 5 Total 54 1–4 years Birth defects, genetic conditions 14 Malignancy 8 Total 22 5–9 years Malignancy 10 Birth defects, genetic conditions 3 Other conditions determined at birth 3 Other acquired disease 4 Total 20 10–14 years Birth defects, genetic conditions 10 Malignancy 7 Other acquired disease 5 Total 22 15–17 years Birth defects, genetic conditions 7 Malignancy 4 Other conditions determined at birth 4 Other acquired disease 2 Total 17 Total 327

Adapted from CCOPMM. Annual Report for the Year 2005

21.1.3 Models of Paediatric Palliative Care in Australia

Paediatric palliative care has not developed in a coordinated way in Australia. As has been the case worldwide, service models have developed idiosyncratically and in response to available resources, patient population, service gaps, clinical leadership and perceived need. The development of most services has followed small, locally conducted studies into the palliative care needs of children and families [9–11]. Activity has largely been driven by individual practitioners who, having become aware of initiatives overseas, have seen opportunities to improve the care provided to children and families locally. Dr John Collins of the Department of Pain Medicine and Palliative Care at the Children’s Hospital at Westmead in Sydney and Sara Fleming from the Paediatric Palliative Care Service in Adelaide were the first to 21 Paediatric Palliative Care in Australia and New Zealand 383 establish services. Initiatives in most other major capital cities were underway by the late 1990s. Although services have developed independently of one another, there has been a strong and collegial relationship between more experienced clinicians who generously support those newer to the field. This spirit of generosity and willingness to share ideas, experience and expertise has been crucial to the development of paediatric palliative care in Australia. The models in current use are varied and reflect the needs of the local population and the health care resources and systems available. The key challenge in Australia has been to provide an equitable standard of palliative care to a population distributed over an enormous land mass. Resources have been limited and this has led to an analytical and creative approach to service development. It has not been considered feasible to develop a parallel system of palliative care for children in Australia. Instead, models have developed which leverage, integrate and complement existing resources [12, 13]. Children are able to access high-quality tertiary paediatric care in the hospital setting but community-based paediatric services are limited. Community-based palliative care services are available but largely adult and cancer-focused. Most specialist paediatric palliative care services in Australia seek to build links between these two sectors so that children can move seamlessly between them. They also seek to add value by providing expertise on palliative care issues in the paediatric setting and on paediatric issues in the palliative care setting. With the exception of Tasmania, a small island state in the country’s south with a population of only 500,000, all Australian states have at least one specialist paediatric palliative care service. All are based at tertiary paediatric centres. At this stage the Northern Territory and the Australian Capital Territory do not have such services but are able to consult with specialists in neighboring states. There are two children’s hospices in Australia. Bear Cottage in Sydney is organizationally part of, but physically separate from, the Children’s Hospital at Westmead. Very Special Kids is both organizationally and physically separate from the Royal Children’s Hospital in Melbourne but maintains a strong alliance with the hospital through the Victorian Paediatric Palliative Care Program. In 2002, the Australian Government commissioned a national project to:

• review existing models of paediatric palliative care; • identify areas in need of development; and, • identify a model of care that would best meet the needs of children with life- limiting conditions and their families [14].

The key ﬁndings suggest that parents wanted, ‘an integrated, user-friendly, co-operative, interdisciplinary, ﬂexible, compassionate service, not a fragmented, labyrinthine collection of services that did not “speak to each other”’ [14]. Important issues included the additional cost of providing palliative care to paediatric patients (estimated as 40% greater than for adult patients) and major gaps in support for fathers, siblings and rural families. The authors proposed a model of care founded on the principles of continuity, a holistic approach, choice, compassion and support 384 J. Hynson and R. Drake for the professionals involved, and in which palliative care was integrated with other modes of care. Regrettably, this work did not advance the development of paediatric palliative care in Australia. Only one of a number of major recommendations was acted upon: the creation of a written resource for families. Whilst this objective was very worthwhile, other equally critical initiatives remain unaddressed (e.g., the development of national clinical practice guidelines, development of a national data set, allocation of greater resources, education and training of staff, and program evaluation).

21.1.3.1 The Victorian Paediatric Palliative Care Program – An Example of an Australian Model of Care Victoria is located in the southeast. Its capital city is Melbourne. As in other areas of Australia, Victorian children with life-limiting conditions utilize a range of services and supports. These include those provided through the paediatric, palliative care and disability sectors, as well as community-based support agencies and general practitioners. In 2000, a speciﬁc program for children with palliative care needs called The Victorian Paediatric Palliative Care Program (VPPCP) was introduced. What follows is a description of the types of services available in this program.

Paediatric Services The Royal Children’s Hospital (RCH) is the tertiary paediatric centre for the state of Victoria (population of children aged <18 years approx 1.2 million) [1]. It is located in the central metropolitan region of Melbourne. A smaller paediatric program operates through Southern Health at the Monash Medical Centre in the southern part of the city. The RCH provides high-level sub-specialist care and most Victorian children with complex or chronic conditions are linked to the RCH at some point in their illness. A number of regional and rural centres provide secondary level paediatric services and community-based paediatricians operate throughout the state. Although generalist nursing services can be provided, the availability of specialist paediatric nurses in the community is very limited. Hospital-in-the-home programs provide only short-term support to children who would otherwise require inpatient care. A range of other programs for children with complex medical conditions utilize nurses to train and support carers to provide respite care. These programs have very narrow eligibility criteria that exclude many children with palliative care needs.

The Children’s Hospice Very Special Kids (VSK) House in Melbourne is a children’s hospice. Purpose built in 1996 for the provision of respite, transition and terminal care, this eight-bed facility is located in inner, eastern Melbourne [15]. The hospice is staffed by paediatric nurses and carers. General practitioners with experience in caring for children with 21 Paediatric Palliative Care in Australia and New Zealand 385 life-limiting conditions visit daily and are on-call. The hospice facility is used predominantly for respite care but a small number of children receive terminal care there each year. In addition to hospice-based care, the VSK organization offers family support through a network of trained counselors and volunteers. The range of programs includes sibling days, bereavement support, family camps and activities, a remem- brance day and a regular newsletter. While the organization receives some government funding, most of the operating costs, including those of the hospice facility, are met by private donation. Children are eligible for support from VSK if they are aged less than 18 years and have a life-limiting condition that is likely to result in death in childhood or early adulthood.

Palliative Care Services There are about 40 community palliative care services in the state of Victoria. These range from fully developed regional teams comprising palliative care physicians, nurses, psychologists, bereavement counselors and volunteers to single person operations. Most patients who access these palliative care services are older patients with malignant conditions; fewer than 10% have other illnesses [16]. Although staff working in palliative care services has valuable skills in symptom control, family support and the management of the dying, they generally lack experience with paediatric issues. Prior to the development of the VPPCP, this served as a barrier to the utilization of palliative care services by children and the paediatric health professionals who might refer them. Families were rarely referred to such services even if they elected to care for their child at home [10].

General Practitioners While general practitioners (GPs) or family doctors are available to all children in Victoria, only some children have a GP involved in providing palliative care. Other children ﬁnd themselves immersed in the hospital system and rely on this for primary care. Few GPs are able to offer home visiting or out-of-hours services, although there are some who will make exceptions for families facing the death of their child. Many GPs do not feel conﬁdent actively participating in the palliative care of a child.

Other Services Children with life-limiting conditions access a range of other services. Most are attending school and many of those with disabilities attend special schools where specialist staff such as nurses and allied health professionals is available. These individuals are often very involved in the provision of palliative care. Children may also access a range of disability services, respite care, family support groups and equipment distribution services. 386 J. Hynson and R. Drake

The way in which services come together to support a child needing palliative care is best illustrated by a hypothetical case example. This case typiﬁes a child living with a life-limiting condition and highlights the potential number of individuals and agencies that may be involved in providing care, as well as the various care settings in which care may be provided.

Case Example Billy is an 8 year-old boy with adrenoleukodystrophy. Although in the ﬁnal stages of his disease and very unwell, he continues to attend a special school. He is frequently admitted to hospital with respiratory infections and spends 1 week in every 12 at the children’s hospice. The following individuals and agencies are involved in providing Billy’s palliative care:

• A community-based general paediatrician who holds an overall picture of Billy’s condition, coordinates his medical care, assists the family with decision-making and is involved in managing symptoms; • A GP who manages day-to-day issues such as respiratory infections, constipation and pain; • Paediatric respiratory, gastroenterology, neurology and orthopoedic specialists who provide advice concerning the management of a range of issues relevant to their individual specialties; • Allied health professionals including social workers, physiotherapists and occupational therapists based at the hospital and the school; • A paediatric home care program which trains carers to provide respite and also provides a case manager to coordinate care; • An equipment distribution service which provides a wheelchair and other aids; • A children’s hospice which provides out-of-home respite care, support for Billy’s parents and siblings and a volunteer who helps with shopping; • A local, adult palliative care service which provides specialist palliative care nursing, counseling and music therapy; • A specialist paediatric palliative care program which helps Billy access many of these services, resources and supports the agencies involved, and provides specialist input regarding decision-making and the management of a range of physical, emotional, psychological and social issues.

The Victorian Paediatric Palliative Care Program (VPPCP) Although Victorian paediatric health professionals had individually applied themselves with compassion and thoughtfulness to the care of dying children, there had been little collective or formal discussion on this topic prior to 2000. Until that time, care for children with life-limiting conditions was provided by hospital 21 Paediatric Palliative Care in Australia and New Zealand 387 or community-based paediatricians, nurses and social workers. Palliative care providers were rarely involved in the care of children. Although VSK was involved in providing support to families, links between the RCH and the hospice were weak. In the late 1990s, staff at the RCH became increasingly aware of the palliative care needs of children with life-limiting conditions. This occurred as a result of the Home and Community Care Department’s involvement in the management of seriously ill children at home. There was a relatively high mortality among this physically vulnerable population and staff members were eager to improve the level of support available. Other health professionals in the hospital were also concerned about how best to manage children and in 1999, a project was commissioned by the group [10]. The objectives of this project were to:

• Determine the nature and extent of the patient population; • Examine the needs of the patient population; • Solicit input from a range of health care professionals in the hospital; • Study the local context in terms of service availability; • Study models of care nationally and internationally; • Identify the components of best practice; • Suggest a suitable model for the state of Victoria.

Through interviews with staff and bereaved parents, a number of key ﬁndings were identiﬁed. Most of the children who needed palliative care wished to be cared for at home but the paediatric sector lacked the community infrastructure and expertise necessary to provide such care. The palliative care sector, on the other hand, possessed the infrastructure and some of the expertise but lacked experience with children. Although it was clear that children with life-limiting conditions had distinctive needs, the relatively small patient population made the provision of a completely separate paediatric palliative care service impractical. In an effort to begin to address these issues, a consultation-liaison team (the VPPCP) was funded by the Victorian state government and established in 2000. One of the aims of the program was to forge links between the paediatric and palliative care sectors so that their complementary skills, services and expertise could be combined to meet the needs of individual children. Auspiced by the RCH, the VPPCP functions as an alliance between the two tertiary paediatric centres (RCH and the Paediatric Program at Southern Health) and VSK. A multidisciplinary team including medical, nursing, social work and occupational therapy personnel operates using a consultation-liaison model of care. Through care planning, coordination, staff education and the provision of advice on an individual basis, the program augments and integrates the following existing service models:

• inpatient care on the appropriate ward of a paediatric tertiary or regional centre; • inpatient hospice care at VSK House; and, • home care, with or without the support of community-based palliative care services, in both rural and urban settings. 388 J. Hynson and R. Drake

Children requiring palliative care in Victoria utilize various combinations of these services. Some (e.g. children with neurodegenerative conditions) may be diagnosed at a tertiary centre and are then cared for predominantly in the community by a paediatrician, a GP and various support agencies such as disability services and VSK. Palliative care services may or may not be involved. Others (e.g. children with malignancies and cystic fibrosis) have intense ongoing relationships with their tertiary centre. Many of these children do not have a community-based paediatrician or GP involved in their care. Palliative care services often become involved late in their illness. The VPPCP does not receive resources to provide direct care to children and families. It works to ensure families have access to information and resources and supports and consults to health professionals from both the paediatric and palliative care sectors in the provision of care. The program also takes an active role in advocacy and training and holds discretionary funding to purchase goods and services that cannot be provided by other programs. Most states in Australia have at least one specialist paediatric palliative care service and most work in a very similar way to the VPPCP in that they leverage, support and coordinate available resources to ensure the best possible care is provided to the child. Staffing arrangements vary with some initiatives being led by medical professionals and others by nursing professionals. All have grown out of paediatrics rather than palliative care. Born of necessity, the close relationship between paediatrics and palliative care has been beneficial with health professionals in both sectors learning a great deal from one another.

21.1.4 Key Initiatives in Australia

21.1.4.1 Formation of a National Reference Group In 2007, the Australian Paediatric Palliative Care Reference Group was established. The goal of this national group, comprising representatives from states and territories, was to lead the development of paediatric palliative care in Australia by promoting cohesion and facilitating the efﬁcient use of the limited resources available. The group is comprised of members from a range of disciplines who work in or with established paediatric palliative care services across Australia. There is also representation from New Zealand. The role of Chair rotates from state to state every 2 years. The group seeks to:

• share information, resources and experiences; • advocate for the needs of children, their families and those who care for them; • endorse a national deﬁnition of paediatric palliative care and a framework of principles and levels of care; • develop standards and guidelines with reference to the hospice, hospital and home environment; • discuss and develop research projects and priorities, facilitating multi-site collaboration, competitive submission for funding and recording of research activity; 21 Paediatric Palliative Care in Australia and New Zealand 389

• represent paediatrics within professional groups and Commonwealth groups at State/Territory and National levels; • establish international links; • review and facilitate education and training, including postgraduate study, workshops and a national conference.

The group has been particularly successful in promoting cohesion and encouraging the efﬁcient use of resources. Examples of national projects include the production of a guide for health professionals involved in the provision of palliative care to paediatric cancer patients and a range of quality initiatives [17]. A key challenge for this group is that it remains unfunded and is not yet afﬁliated with the primary national body- Palliative Care Australia. It is reliant on the good- will of its members. Dr John Collins, Head of Pain Medicine and Palliative Care at the Children’s Hospital at Westmead in Sydney organizes a national symposium each year. Members of the Reference Group generally attend this symposium and take the opportunity to hold a face-to-face meeting at that time. The symposium has been crucial in fostering cohesion and information sharing between providers of paediatric palliative care in Australia and New Zealand.

21.1.4.2 Quality Initiatives A key initiative of the Australian Paediatric Palliative Care Reference Group was to adapt and use a national palliative care standards assessment program for use in the paediatric setting. This was completed in 2010. The National Standards Assessment Program (NSAP) is a federally funded, self-assessment program through which services determine to what extent their service meets a set of national standards [18]. Services are asked to provide evidence and to prioritize areas for improvement. A report is submitted and responses can be compared with similar services across Australia. In addition to the NSAP, specialist paediatric palliative care services across Australia have been collecting a set of clinical indicators. The Quality Manager with the Department of Pain Medicine and Palliative Care at the Children’s Hospital at Westmead in Sydney has led this initiative and the national group is currently working towards a data-sharing agreement that will facilitate benchmarking and national data analysis.

21.1.4.3 Training and Education The Royal Australasian College of Physicians now has a dedicated training pathway for those wanting to specialize in paediatric palliative medicine. A detailed curriculum has been produced although currently only one training position exists in Australia and this post is with the Department of Pain Medicine and Palliative Care at the Children’s Hospital at Westmead in Sydney. Individuals trained at this centre have gone on to lead major paediatric palliative care initiatives internationally (one is Medical Director of the Department of Pain Medicine, Palliative Care and 390 J. Hynson and R. Drake

Integrative Medicine at the Children’s Hospitals and Clinics of Minnesota in the US and another is leading the development of the first children’s hospice in the Middle East). The goal is that more specialist training positions will become available in the future to train the next generation of paediatric palliative care specialists, and, allow trainees in other fields (e.g. oncology, neurology, neonatology, developmental medicine) to gain skills and experience in the provision of palliative care. There are also efforts underway to train specialist nurses. One nurse practitioner is practicing in South Australia and two others are in training. All of the specialist paediatric palliative care services in Australia are active in providing education to health professionals from a range of disciplines at both undergraduate and postgraduate levels. Many have affiliations with local universities.

21.1.4.4 Initiatives in Bioethics The majority of inpatient deaths in tertiary hospitals occur in circumstances of high acuity among patients with chronic conditions [19]. Discussions with families about withholding or withdrawing life-sustaining treatment interventions tend to occur relatively late in the course of the illness. Paediatricians and trainees report a number of barriers to these discussions [20]. Barriers include clinician concerns about family readiness for the discussion, family disagreement with the treating team regarding the child’s prognosis and diagnosis, prognostic uncertainty, and concerns about how to manage family requests for treatments that are not perceived to be in the child’s best interest [20]. Clinical decision-making is important to the provision of palliative care for two reasons. First, the relief of suffering is a central tenet of palliative care and while much of the focus is on the suffering caused by the underlying illness, it is important to remember that suffering can also be caused by efforts to treat the underlying illness or prolong life. Such efforts can only be justified when the benefit outweighs the burden and at times, it can be difficult to know what interventions are and are not in a child’s best interest. Ensuring that health professionals have the requisite skills in bioethics or are able to access individuals with those skills is crucial to preventing avoidable suffering and enhancing palliative care. Second, the field of paediatric palliative care continues to face the challenges associated with late referral [21, 22]. Providers of palliative care are often aware of children who could benefit from their support but who cannot access it because of reluctance by the treating team to make a referral. Whether or not a child receives palliative care is often determined by decisions regarding goals of care. The quality of this decision-making process is therefore a key determinant of access. Building the capacity of paediatricians to work with parents to make decisions in the child’s best interests is critical to enhancing quality of life and minimizing suffering. Palliative care specialists have special skills in helping families and colleagues determine goals of care and decide upon what interventions are and are not in the best interests of the child. In addition to their day-to-day clinical work, they can use 21 Paediatric Palliative Care in Australia and New Zealand 391 a systems approach to influence this decision-making process more broadly. At the Royal Children’s Hospital in Melbourne, a Children’s Bioethics Centre was established in 2008. The Centre incorporates a case consultation service, educational initiatives and the creation of resources to help guide practice. There is a close relationship between the palliative care service at the hospital and the Bioethics Centre as the paediatrician from the service coordinates the bioethics case consultation service. A large number of case consultations involve end-of-life decision-making. The Centre has also developed a set of guidelines, web-based resources, a document upon which to record decisions made and a communication skills training package to help build the capacity of medical staff to work through difficult decisions. It is intended that by influencing practice further ‘upstream’, more timely decisions will be made regarding goals of care and more children will be able to access palliative care.

21.1.4.5 Telemedicine Although a substantial proportion of Australia’s population is concentrated in its capital cities, a signiﬁcant number of individuals are scattered across a vast area. This creates a challenge for those charged with the responsibility of providing health care in more remote settings. Innovative approaches involving the use of telemedicine and other technologies have been shown to be very effective. The paediatric palliative care service at the Royal Children’s Hospital in Brisbane has been at the forefront of this work [23, 24].

21.1.4.6 Policy Development In one state, palliative care providers have collaborated with colleagues in government to develop a policy on paediatric palliative care [25]. An implementation committee has been formed (together with a family advisory group) to oversee the implementation of this policy.

21.1.5 Challenges

Although Australia is fortunate to have a cohesive, dedicated and creative group of paediatric palliative care providers, a number of challenges remain. These include:

• Ensuring equitable access to specialist palliative care across the nation. Provision of care to children in remote areas remains a challenge; • Providing culturally-sensitive palliative care; • Creating training positions to build a sustainable workforce and to expose trainees in other specialties (paediatrics and palliative medicine) to palliative care; • Dispelling some of the myths that surround palliative care; 392 J. Hynson and R. Drake

• Advocating for the patient group. As in many developed countries, there is a tendency to forget that children still die of incurable conditions and this is reﬂected in resource allocation; • Research. Although a number of Australian individuals have contributed to, and arguably led, key research agendas internationally, there is much more to be achieved in this area.

Australia is a ‘lucky country’ in so many ways. As a developed nation, it has a relatively low infant and child mortality rate and its citizens are comparatively wealthy. Nonetheless, it faces signiﬁcant challenges in providing high quality paediatric palliative care to patients who are widely distributed across a large land mass. This challenge has necessitated a careful and considered approach to the use of resources. It has also brought a group of creative specialists together in a spirit of generosity and collegiality that has led to a successful national approach to a number of projects and initiatives. An important next step is to ensure services grow and develop into the future.

21.2 New Zealand

21.2.1 Introduction

New Zealand (NZ) or as it is known in Maori,¯ Aotearoa meaning land of the long white cloud, is an island country in the south western Pacific. It is geographically isolated, being some 2,000 km southeast of Australia, with Antarctica to the South and New Caledonia, Fiji and Tonga the closest neighbours to the north. New Zealand’s latitude approximates from 34 to 47◦ S meaning it passes through the temperate zone of the world. However, surrounding ocean currents and the lack of a continental influence results in a milder climate where temperatures rarely fall below 0◦C or rise above 30◦C in populated areas. The longitudes of the country are in the extreme east of the Prime Meridian and as a consequence NZ standard time is 11 h ahead of Greenwich Mean Time. NZ extends more than 1,600 km along its main axis, has approximately 15,134 km of coastline and a total land area of just over 268,000 square km; a little more than that of the United Kingdom. It consists of two main islands, the North and South Island, and numerous smaller islands, most notably, Stewart Island and the Chatham Islands. The South Island is the largest land mass and is divided along its length by the Southern Alps with 18 peaks over 3,000 m, the highest of which is Mount Cook/Aoraki at 3,754 m. Large tracts of forest are devoted to national parks with the south-western corner, Fiordland, being an area of high mountains cut through with steep fjords. The North Island is less mountainous and is the site of the capital city, Wellington, and the largest city, Auckland at 1.3 million people. A large volcanic plateau runs through the centre of the North Island and has formed the North Island’s 21 Paediatric Palliative Care in Australia and New Zealand 393 highest mountain, Mount Ruapehu at 2,797 m and the country’s largest lake, Lake Taupo, a water filled caldera. NZ is a developed country with a very high human development index and nominal gross domestic product (GDP) per capita of USD$ 31,067. It is run by a parliamentary democracy governmental system and constitutional monarchy with Queen Elizabeth II the current monarch. NZ ranks highly in international comparisons on many topics including high educational attainment, economic freedom and having cities that consistently rank among the most liveable in the world. The Treaty of Waitangi is NZ’s founding document. It takes its name from the place in the Bay of Islands where it was first signed, on 6 February 1840. The Treaty is an agreement, in Maori¯ and English, between the British Crown and about 540 Maori¯ rangatira or chiefs. The Treaty is a broad statement of principles upon which a nation state and government was built. It is not considered part of NZ domestic law, however, the principles are referred to in several Acts of Parliament and it is now common to refer to the intention, spirit or principles of the Treaty. The total population of NZ at the end of 2010 was estimated to be 4.3 million people giving a low overall population density [26]. The majority of people are of European decent while the indigenous Maori¯ people are the largest ethnic minority with a population of around 560,000. Asian (355,000) and Pacific (266,000) peoples make up other significant ethnic groups. The most commonly spoken language is English (98%) and Maori¯ is an official language. NZ has an estimated population of children aged 0–19 years of a little over 1.2 million [26]. There has been no direct data on the total number of NZ children/young people with life-limiting conditions but the number of children aged 0–17 years who have died of a life-limiting illness has been estimated from mortality data at 1.14 per 10,000 children with 37% of these deaths due to cancer, 11% cardiac conditions, 24% congenital anomalies, and 28% other conditions [27]. At the time of this study, 71% of these children died at home. This would suggest around 1,500 children/young people with a life-limiting illness would benefit from a paediatric palliative care approach in NZ each year.

21.2.2 Health Systems and Policy

The health care system in NZ has moved, over the last three decades, from an essentially fully public system to a mixture of public and private through reforms to introduce market and health insurance elements. In 2008, NZ spent 9.8% of GDP on health care or USD$ 2,683 per capita with approximately 80% being public expenditure [28]. The Ministry of Health (MOH) is responsible for leading and supporting the health sector and is the principal advisor to the government. It has oversight standards and funds the 20 District Health Boards (DHBs) which are responsible for providing or funding health and disability services in their community. The eight- member board for each DHB is elected every 3 years, with the exception of one member who is appointed by the MOH. 394 J. Hynson and R. Drake

The DHBs own and run the public hospitals and fund and watch over Primary Health Organizations (PHOs). They are required to be entirely non-proﬁt, democratic bodies and are mandated to focus on the health of communities. Almost all New Zealanders are enrolled in a PHO because of ﬁnancial incentives attached to patient enrolment. Primary care is subsidized for children less than 6 years of age, lower income earners and high users of health services. Public hospitals provide a free, relatively extensive and high-quality health service to citizens or permanent residents. However, long waiting lists have developed for a number of operations and a secondary market of private health insurance exists. This allows members to have treatments and operations in the private sector. The government run, Accident Compensation Corporation, covers the costs of treatment for accident-related problems for all people legally in NZ with costs recovered by levies on employers, employees and other sources such as car registration.

21.2.3 Paediatric Palliative Care in the NZ Health System

The question that exists for NZ is how to deliver effective paediatric palliative care services with a limited workforce to a relatively widespread, small group of children/young people and their families or whanau in an environment of constrained health funding. The growing international impetus for establishing specialist paediatric palliative care services resulted in NZ assessing paediatric palliative care as part of a national review of paediatric speciality services by the MOH in 1998 [29]. This identified large gaps and inconsistencies in service provision particularly so young people with non-malignant conditions. The review also highlighted a lack of expertise in palliative care including trained community paediatric nurses, respite care, youth specific services, bereavement services and access to equipment. The review recommended the establishment of a national specialist palliative care service that supported local, regional coordinators who then worked with local health care professionals. A national network would be derived from this core group and be charged with developing national standards of care and monitoring outcomes. Out of this review, a specialist paediatric palliative care service was established in Auckland at Starship Children’s Hospital in 1999. In 2003 the Paediatric Society of New Zealand (PSNZ) sent all DHBs a questionnaire on various aspects of child health including the provision of paediatric palliative care. This confirmed a poor attitude to establishing local coordinators and emphasized that generalist child health teams were providing palliative care for children in addition to their general duties. The other finding of particular interest was the inherent misunderstanding of what paediatric palliative care offered. It was most often equated to the adult experience with many believing it was isolated to children with cancer at the end-of-life. Formal advocacy for the needs of children and young people started in 2003 with the formation of the Palliative Care Working Group by the MOH. The impetus for this came from the publication of the NZ Cancer Control Strategy and was a 21 Paediatric Palliative Care in Australia and New Zealand 395 direct result of the World Health Organization’s call for national cancer control programmes [30]. This forum has had paediatric representation from inception but late in 2008, the political environment dictated the cessation of the working group and two advisory bodies were created. The palliative care community had wanted a single umbrella organization to represent palliative care in NZ but this was not supported politically. The new advisory groups, NZ Palliative Care Advisory Group and Palliative Care Council, remain under the auspices of the Cancer Control Council. The Palliative Care Advisory Group reports to the MOH and continues to have tenured representation for paediatrics while the Palliative Care Council reports directly to the Minister of Health and has a specific role in monitoring and evaluating outcomes. Unfortunately, this body does not have a permanent paediatric position although a paediatric voice is currently present as part of another responsibility. The paediatric community was mobilised in 2008 by the Starship service to form the paediatric palliative care Special Interest Group (SIG) under the PSNZ. Membership to this group has been robust with good representation from around NZ and of a variety of disciplines. The work programme has focussed on supporting paediatric representation at higher level, local services and children/young people and their families/whanau through development of practical clinical guidelines and information sheets. In 2010 a MOH review of the implementation of the 1998 recommendations was conducted. Other than the setting up of the specialist service in Auckland no other recommendations have been acted on. The review, however, did identify the Starship team as providing a national service through its considerable long distance support (phone, electronic, videoconferencing and visits) of other paediatric and palliative care services and acknowledged its vulnerability at being able to sustain this level of activity. The final report, Guidance for Integrated Paediaric Palliative Care Services in New Zealand, is due for release in October 2011 and will recommend the implementation of a national managed clinical network for paediatric palliative care. The infrastructure and business case for such a network has been completed by the PSNZ but the necessary funding to create specific positions for co-ordinators and bereavement services is not yet to hand.

21.2.4 Services for Children

As previously mentioned, the Starship Children’s Hospital has the only specialist paediatric palliative care service in NZ and this will be discussed more in Section 21.2.5. As a consequence, access to specialist paediatric palliative care in NZ is inequitable and general care provision is rarely systematic. The progress of paediatric palliative care outside of Auckland has been ad hoc and delivery of care occurs in a variety of ways. Most commonly, generalist paediatric teams provide care from a hospital setting to children/young people and their families/whanau in the hospital or at the child’s home through an outreach, community paediatric nursing service. In some locations of NZ this is supported by an adult 396 J. Hynson and R. Drake hospice service with children/young people occasionally receiving respite within the adult hospice. The other advantage of such a relationship is children/young people and their families/whanau have access to counselling/bereavement services including siblings of the ill child. For the most part, collaboration between paediatric services and adult hospice has arisen where an individual(s) has taken the time and effort to forge a relationship of understanding. No matter what the set up, local paediatric services, which are largely composed of medical and nursing personnel, go the extra distance for children/young people and their families/whanau with palliative needs. In the Waikato DHB region, immediately below Auckland, a unique constellation of palliative care services for children/young people are provided. Paediatricians and community nurses link with two non-government organisations: Rainbow Place and True Colours Charitable Trust. Rainbow Place, opened in June 2003, and is now a separate facility on the same site as Hospice Waikato. The staff provide nursing and therapeutic support for children/young people with life-limiting/palliative conditions, and therapeutic support for children/young people with a parent, grandparent or signiﬁcant other with a palliative condition. They are able to provide two beds for children/young people at Hospice Waikato for respite care, symptom control and/or end-of-life care, and accommodation for family/whanau, in addition to community support in collaboration with other healthcare professionals. Rainbow Place receives revenue from the Waikato Hospice through its contract with the DHB and community fundraising. True Colours Charitable Trust supports children/young people (0–18 years) who live with a chronic, serious or life-threatening illness and their families/whanau within the Waikato DHB. This family focused service provides an integrated model of care across the illness trajectory and into bereavement with specialist nursing support and psychological care to the sick child/young person and their family/whanau. They work collaboratively with other health providers to deliver the appropriate care in the location of choice of the child/family. Regular education sessions are held with health professionals regarding care of the seriously ill child/young person and their family/whanau, grief issues and self care in the work. True Colours is entirely community-owned. Both Waikato services provide bereavement care and utilise the expertise, advice and support of the paediatric palliative care team in Auckland, as necessary. Canterbury DHB has a paediatric oncologist with 0.2 full time equivalent (FTE) designated to paediatric palliative care and is supported by adult palliative care specialists. This service manages inpatient, outpatient and in the home end-of-life care with the assistance of outreach nurses. A recent appointment has been made of a paediatric palliative care nurse specialist, through funding from the adult hospice, and it is hoped that the position will encompass the care of children/young people and their families/whanau with life-limiting conditions across the South Island. 21 Paediatric Palliative Care in Australia and New Zealand 397

21.2.5 The Paediatric Palliative Care Service at Starship Children’s Hospital, Auckland

The only specialist paediatric palliative care service in NZ was founded in 1999. It has grown from providing paediatric palliative care to the greater Auckland region to becoming an established and clinically valued national interdisciplinary service consisting of 1.0 FTE specialist paediatrician, 1.6 FTE nurse specialist, 1.0 FTE specialist social worker, 0.3 FTE grief/bereavement counsellor (child psychotherapist) and 0.1 FTE child psychiatrist. The service is based at Auckland’s Starship Children’s Hospital but maintains a strong community focus with the aim of delivering seamless care for the child/young person and their family/whanau across the hospital-community continuum in the setting(s) of their choice. It embraces the attitude of collaboration between services and has a long history of working alongside the referring medical or surgical service, adopting this approach in recognition of the importance of maintaining the often extensive relationships of health care professionals from the referring service. However, it does take on a more prominent role once the child/young person returns home because of their capacity to provide home based care and when the child/young person enters the end-of-life phase, acknowledging this as a core skill of paediatric palliative care. Adherence to this ideal of collaboration sees the paediatric palliative care service liaise with and support paediatric services in the hospital and, once the child leaves the hospital setting, to provide regular updates and maintain the involvement of referring health care professionals, where appropriate and possible. Care in the community includes direct clinical support, liaising with and supporting local health care services including community paediatric services, adult palliative care services and primary health care professionals to provide the necessary day to day care. By necessity, direct care is largely limited to children/young people and their families/whanau living in the greater Auckland region but consultative support and advice is provided nationally. Referrals can be made by any health care professional involved in the care of the child/young person or from the family/whanau. All referrals are discussed with the principle paediatric service especially when the referral has been made by someone outside of that service. The lack of a national paediatric palliative care approach is reﬂected in the absence of national guidelines for referring children/young people for palliative care. The service covers the age range of 0–15 years, consistent with Auckland DHB policy, but it is available to support young people 15 years of age and older when they remain under the care of a paediatric service and it is appropriate for their care to continue with paediatric services. The service is also available for families/whanau who received a prenatal diagnosis of a life-limiting condition. In 2009, 28% of referrals were for infants less than 1 year of age, 18% in the 1–5 year age group, 22% of children were aged 5–10 years and 20% 10–15 years of age. In the older age group, 10% of referrals were for young people aged 15–20 years and 2% 20 years and older. 398 J. Hynson and R. Drake

Referrals to the Starship service over the 4-year period, 2005–2008 inclusive, by disease classiﬁcation indicated 43% of children had cancer with this group being dominated by central nervous system tumours (16% of the overall total). Neurologic conditions including metabolic diseases and syndromes made up 32% and cardiac anomalies 13% of the overall referrals. The remaining 19% of referrals consisted of a diverse group of conditions affecting the respiratory, infectious, immune (non HIV/AIDs), renal, hepatic and gastroenterology systems. In 2009 the service was able to change the hospital’s focus on ‘Do Not Resuscitate’ orders and, instead, replace this with an ‘Allow Natural Death’ policy and accompanying ‘End-of-Life Care Plan’. This has been instituted in the hospital and made available nationally through the paediatric palliative care SIG (Figs. 21.1 and 21.2).

21.2.6 Education and Training

The Starship service has, for a number of years, contributed substantially to a Child and Adolescent Palliative Care paper as part of the Auckland Universities Palliative Care Postgraduate Study program. Medical training in palliative care is able to be undertaken through the Royal Australasian College of Physicians Chapter of Palliative Medicine. To be recognized as a paediatric palliative care specialist, dual training in paediatrics and palliative care is required. There has been a recent alteration to the training pathway so that

Fig. 21.1 Starship Children’s Hospital 21 Paediatric Palliative Care in Australia and New Zealand 399

Fig. 21.2 Starship’s atrium – a place to gather and play adult palliative care physicians can be recognized as a paediatric palliative care specialist after completing palliative care training and a minimum of 2 years paediatric training. Unfortunately, there are no speciﬁc paediatric palliative care training pathways for nursing or allied health. Future healthcare professionals in this area are likely to be experienced paediatric healthcare workers with an interest in this area who are able to train with, or, be mentored by, the Starship Children’s Hospital service.

21.2.7 Research

Research into paediatric palliative care in NZ has been infrequent and largely isolated to higher level reviews by the MOH related to service provision. There have been occasions where interested post-graduate students have conducted research in paediatric palliative care as part of their thesis but no co-ordinated research program exists. Clinical research is hampered by a resourcing and funding environment that barely provides for clinical coverage, let alone research.

21.2.8 Barriers and Strategies

There are barriers to deal with at many levels and different strategies are required to lift them to providing paediatric palliative care. Like the practice of paediatric palliative care, this is beyond the resources of one person and working with a group 400 J. Hynson and R. Drake of people increases the chance of success. Forming a SIG within the PSNZ has been an important step in NZ to achieve such diversity. This approach has also provided a link to the wider paediatric community and supports those involved in higher level advocacy. A fundamental problem for paediatric palliative care in NZ is, as an amalgam of two specialties (palliative care and paediatrics) that are themselves under resourced, financial support has been difficult to attract. In NZ money for children’s palliative care has been provided through government health funding not charitable sources. The advantage of this is guaranteed revenue each year. The down side is funding is insufficient to meet emergent need and the private sector are reluctant to fund health services seen to be the responsibility of the government. On the other hand charitable services, highlighted by the Waikato experience, have been unable to secure government funding and are constantly battling to raise funds. It would appear the DHB is unwilling to put money into a service that is currently being provided without drawing on their resources! Promotion and education of the palliative needs of children are essential to challenge and change misconceptions. Clinically, healthcare professionals are for the most part pragmatic and the value of a dedicated service was, in due course, embraced as a result of the improved outcomes seen for the child/young person and their family/whanau. This could have been made more powerful if a comprehensive audit program was funded at the inception of the Starship service. It has been important for the only specialist paediatric palliative care service to have a national focus and direct time and energy to lobbying with the intent of influencing health policy and funding. This has been rewarded with positions on two important Ministry advisory groups. Lobbying could be further enhanced by having an influential consumer group advocating for children/young people and their families/whanau in need; this has yet to be effectively achieved. Finally, taking the clinical working philosophy of collaboration and inclusion into non-clinical areas has been important in establishing and growing relationships. The fertilizer to see this flourish in the future into improved paediatric palliative care provision to all children/young people and their families/whanau in NZ is a tincture of optimism, patience and perseverance.

References

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4. Australian Bureau of Statistics (2007) Health of children in Australia: a snapshot, 2004–5. Australian Bureau of Statistics. http://www.abs.gov.au/ausstats/[email protected]/mf/4829.0.55.001/. Accessed 2011 5. Lenton S, Goldman A, Eaton N, Southall D (2006) Development and epidemiology. In: Goldman A, Hain R, Liben S (eds) Oxford textbook of palliative care for children. Oxford University Press, Oxford, pp 3–13 6. Craft A, Killen S (2007) Palliative care services for children and young people in England. An independent review for the Secretary of State for Health: Department of Health, United Kingdom 7. Consultative Council on Obstetric and Paediatric Mortality and Morbidity (2007) Annual report for the year 2005, incorporating the 44th survey of perinatal deaths in Victoria. Melbourne 8. Royal Children’s Hospital (2006) Victorian paediatric palliative care annual report 2005/6. Royal Children’s Hospital, Melbourne 9. Collins J, Stevens M, Cousens P (1998) Home care for the dying child. Aust Fam Physician 27:610–614 10. Hynson J, Sutton D, Schwarz R, Devereux L, Sawyer S (2000) Paediatric palliative care: towards best practice at the Royal Children’s Hospital. Royal Children’s Hospital. Melbourne 11. Darbyshire P, Haller A, Fleming S (1997) The interstellar cold: parents’ experiences of their child’s palliative care: a report prepared for the South Australian Health Commission, Palliative Care Program – Statewide Projects. Department of Nursing & Midwifery Research & Practice Development, Adelaide 12. Hynson J, Sawyer S (2001) Paediatric palliative care: distinctive needs and emerging issues. J Paediatr Child Health 37:323–325 13. Hynson J, Gillis J, Collins J, Irving H, Trethewie S (2003) The dying child: how is care different? Med J Aust 179(suppl):S20–S22 14. Australian Government Department of Health and Ageing (2003) Paediatric palliative care service model review. Rural Health and Palliative Care Branch, Australian Government Department of Health and Ageing, Canberra 15. Very Special Kids (2006) Improving the quality of life for families of children with life- threatening illnesses. 2005–2006 Annual Report. Very Special Kids, Melbourne 16. Rosenwax L, McNamara B (2006) Who receives specialist palliative care in Western Australia – and who misses out? Palliat Med 20:439–445 17. Royal Children’s Hospital (2009) A practical guide to paediatric oncology palliative care. Royal Children’s Hospital, Brisbane 18. Palliative Care Australia (2005) Standards for providing quality palliative care to all Australians. Palliative Care Australia, Canberra 19. Stark Z, Hynson J, Forrester M (2008) Discussing withholding and withdrawing of life- sustaining medical treatment in paediatric inpatients: audit of current practice. J Paediatr Child Health 44:399–403 20. Forbes T, Goeman E, Stark Z, Hynson J, Forrester M (2008) Discussing withdrawing and withholding of life sustaining medical treatment in a tertiary paediatric hospital: a survey of clinician attitudes and practices. J Paediatr Child Health 44:392–398 21. Fowler K, Poehling K, Billheimer D, Hamilton R, Wu H, Mulder J et al (2006) Hospice referral practices for children with cancer: a survey of pediatric oncologists. J Clin Oncol 24:1099–1104 22. Mack J, Wolfe J (2006) Early integration of pediatric palliative care: for some children, palliative care starts at diagnosis. Curr Opin Pediatr 18:10–14 23. Bensink M, Armﬁeld N, Pinkerton R, Irving H, Hallahan A, Theodoros DG et al (2009) Using videotelephony to support paediatric oncology-related palliative care in the home: from abandoned RCT to acceptability study. Palliat Med 23:228–237 402 J. Hynson and R. Drake

24. Bensink M, Armﬁeld N, Irving H, Hallahan A, Theodoros DG, Russell T et al (2008) A pilot study of videotelephone-based support for newly diagnosed paediatric oncology patients and their families. J Telemed Telecare 14:315–321 25. Department of Health (2008) Strengthening care for children with a life-threatening condition: a policy for health, palliative care, disability, children’s services and community care providers 2008–2015. Department of Health, Victoria, Melbourne 26. New Zealand Government (2011) Statistics New Zealand. http://www.stats.govt.nz. Accessed 02 Feb 2011 27. Jones R, Trenholme A, Horsburgh M, Riding A (2002) The need for paediatric palliative care in New Zealand. NZ Med J 115(1163):U198 28. Ministry of Health (2010) Health expenditure trends in New Zealand 1998–2008. Ministry of Health, Wellington 29. Health Funding Authority and Paediatric Society (1998) Through the eyes of a child: a national review of paediatric speciality services. Health Funding Authority, Wellington 30. Minister of Health (2003) The New Zealand cancer control strategy. Ministry of Health and the New Zealand Cancer Control Trust, Wellington Part VII South America Chapter 22 Pediatric Palliative Care in Argentina

Rosa M. Germ, Stella Marys Binelli, and Marcela Pose

Abstract This is intended to share with the rest of the world 25 years of experience in palliative care in Argentina, particularly as palliative care is applied to children suffering with life-limiting diseases. These services are covered by pediatric palliative care, which started to develop as a separate discipline from adult palliative care in the 1990s. The pioneering experience in pediatric palliative care began at Hospital de Pediatría Juan P. Garrahan (Garrahan Children’s Hospital) in 1992, with the construction of the Pediatric Palliative Care Unit (PPCU). A wide assortment of activities developed over time in this PPCU, such as training of human resources, especially medical doctors and nurses, among other specialties. In terms of training, the PPCU also offers 2-year scholarships programs for medical doctors, participates in teaching activities for health teams and health-related professionals on the hospital premises and individuals from outside the hospital as well. In terms of medical assistance, the PPCU provides care for children, and gives counseling to their parents, with cancer and chronic and life-limiting conditions. The program is also engaged in research. This chapter also describes pediatric palliative care programs that were developed in Rosario and Neuquen. Lessons learned and future steps are described for all three programs.

Keywords Argentina · Development pediatric palliative care · Assistance · Training · Research

22.1 Introduction

Argentina is a country in the southern region of South America. It is the second largest country in South America after Brazil. Its length is about 3,300 km (measured from North to South) and its width is 1,385 km (measured East to West). In the southern most region, the province of Tierra del Fuego and a series of islands like Isla de los Estados can be found. The country is situated between the Andes mountain chain in the West and the Southern Atlantic Ocean in the East. Because of the

R.M. Germ (B) Universidad de Ciencias Empresariales y Sociales, Buenos Aires, Argentina PPCU Hospital de Pediatria Dr. Juan P. Garrahan, Buenos Aires, Capital Federal 1245, Argentina e-mail: [email protected]; [email protected]

C. Knapp et al. (eds.), Pediatric Palliative Care: Global Perspectives, 405 DOI 10.1007/978-94-007-2570-6_22, C Springer Science+Business Media B.V. 2012 406 R.M. Germ et al. transition between the mountains in the West and the plains in the East, Argentina offers a wide variety of landscapes. The Andes stretch from Puna de Atacama in the north to Tierra del Fuego in the South, which is an important area for skiing and other winter sports. The highest peak is Aconcagua with 6,962 m. The Puna de Atacama is an extension of the Bolivian Puna, and has peaks of 1,500 m high. According to the latest national census occurring in December 2010, the total population of Argentina is 40,091,359, with over 19 million men and over 20 million women. Forty percent of the population lives in the province of Buenos Aires, concentrated in the so-called Great Buenos Aires (the surrounding suburbs) and Buenos Aires City (the capital). In regard to cancer incidence, the Argentine Hospital Oncohematological Registry, which keeps record of cancer patients in the whole country including the pediatric population up to 15 years of age, indicates that there is a cancer incidence of 124.4 per million of inhabitants (Census 2001, Projection 2004). In terms of sex distribution, there is a slightly greater prevalence of male inhabitants with cancer as compared to female with cancer.

22.2 A Brief Introduction of the Origin of Palliative Care in Argentina

Palliative care in Argentina started in 1985 as a consequence of two initiatives which occurred at the same time. One of these initiatives was encouragement by Professor Ruben Bild, an Argentinean who lived and studied in United Kingdom with Dame Cicely Saunders, resulting in the creation of a foundation assisting terminal cancer patients in Buenos Aires City. Dr. Rosa Germ, one of the authors of this chapter, started her training with Dr. Bild. The second initiative was carried out by Dr. Roberto Wenk, an anesthesiologist from the Province of Buenos Aires, who started to provide home hospice care to his patients. In 1990, the first meeting of palliative care professionals was held and the Asociación Argentina de Medicina y Cuidados Paliativos (Argentine Association of Medicine and Palliative Care) was created. This organization was originally composed by five physicians for adults, one pediatrician, one nurse and one psychologist and led to a lot of work and effort which has been instrumental for training and spreading palliative care. In September 1992, the Board of the Garrahan Children’s Hospital, located in Buenos Aires City, assigned Dr. Rosa Germ the task of creating the first pediatric palliative care unit (PPCU). Since then, the PPCU has managed to gather and work with four pediatricians, two nurses, scholarship awardees, researchers, pharmacists, chiropractors and mental health consultants. In 1998, the Grupo de Trabajo de Cuidados Paliativos (Palliative Care Work Group) was created specifically for children and adolescents within the framework of Sociedad Argentina de Pediatría (Argentine Pediatric Society) (Fig. 22.1). 22 Pediatric Palliative Care in Argentina 407

Fig. 22.1 Map of pediatric palliative care units in Argentina

22.3 Pediatric Palliative Care Unit at Garrahan Children’s Hospital

Garrahan Children’s Hospital began providing services in 1987 as a multi-specialty hospital, referral center and tertiary care destination. Initially, the team’s first idea was to treat children with complex and life-limiting conditions and their families, 408 R.M. Germ et al. although the PPCU also provides care to acute patients. The hospital provides comprehensive care including every specialty and is also an organ transplant center at a national level. Pediatric palliative care is provided to children with life-limiting conditions similar to those described in the international literature; genetic diseases, neuromuscular, central nervous system, respiratory and cardiac conditions. The PPCU is also a referral center for cancer patients. To date, there is no accurate information available about the prevalence of children with life-limiting conditions in Argentina as there is in other developed countries; yet, evidence suggests that the prevalence of life-limiting conditions for children is about 30% higher in developing than developed countries. It has been estimated that, annually, about 16% of 700,000 newborns in Argentina will have a chronic condition and will eventually need special care. Many of these children live very far from specialized health care centers. As a result of these factors and several others, Argentina adopted the tenets on palliative care intervention models first published in 1997 in, “A Guide to the Development of Children’s Palliative Care Services”, developed by the Royal College of Pediatric and Child Health with the Association for Children with Life-threatening or Terminal Conditions and Their Families (ACT) (www.act.org.uk). Information in this document, and its endorsement in Argentina, not only allowed the hospital to give a better and more systematic assistance to the child and his/her family, but also to adequate address the human resources of the PPCU. However, the barriers to PPCU have been numerous and diverse. The first, and most important, barrier was to convince the health care community in Argentina that palliative care is not only for children who are going to die and, at the same time, to convince health care workers into administering opioids when necessary to children. At the start of the palliative care movement in Argentina, no one used morphine with patients. Training given to all the pediatricians and nurses at Garrahan Children’s Hospital about assessment and treatment of pain and other symptoms played a key role at this early stage, especially the assistance of a pharmacist, who completed his doctorate with a thesis on Pain Relief and Palliative Care for Children. The team members of PPCU participated in training programs outside Garrahan Children’s Hospital. One of the most important programs was organized by “Pallium”, a non-profit organization that conducted the first postgraduate course on Palliative Care in 1996, endorsed by Oxford University, UK, and Universidad Nacional de La Plata, Province of Buenos Aires (University of La Plata). During the second stage of development of pediatric palliative care at the hospital, another challenge occurred. It was challenging to understand how to incorporate patients with different conditions into the program other than cancer. Pneumonology was the first department whom which the PPCU started working with. PPCU and Pneumonology staff used guidelines published in the Journal Respiratory Care, Special Issue Palliative Respiratory Care in November 2000, to determine how to incorporate children with these conditions. The consent for adults and children was published in 2008 [1]. As previously mentioned, the use of 22 Pediatric Palliative Care in Argentina 409 morphine for pain relief, dyspnea or cough in children with respiratory diseases was another significant challenge. Another important barrier is that it is difficult to decide the moment of consultation in non-oncologic patients in terms of the criterion of terminality, which may be more subtle for non-oncologic than oncologic patients. As a result, the PPCU does not have consultation guidelines for other illnesses; however, this has been solved by consensus with the different specialties involved. Currently, the PPCU works in interdisciplinary teams about the care of patients with neuromuscular conditions, osteogenesis imperfecta, epydermolisis bullosa and cerebral palsy for the treatment of spasticity. The PPCU also receives consultations for pain related to any kind of pathology. The PPCU receives consultations from inpatients and outpatients as well as from the oncologic outpatient clinic. Since this is a referral center, the hospital does not make medical house calls. Due to the fact that patients come from all over the country, a follow up plan is developed together with the local teams, usually via telephone. At the same time, symptom control guidelines of different illnesses are sent to local teams, with palliative care training not only to staff at primary care facilities but also to staff at secondary hospitals. Among the PPCU staff, there is an active participation of nurses, social workers and psychologists, with whom the best strategies for each child and his/her families are discussed and determined. All the staff of the PPCU has received post-graduate certificates from programs in palliative care (Pallium Organization). The PPCU also trains the families by giving them brochures about their children’s illness, treatments their children may face, the use of analgesics and the home care of their children. Currently, the PPCU staff is working on how to solve the issue of the transition and transfer of teenage patients to hospitals or health care centers for adults. To solve this problem, the PPCU is liaising with health care facilities for adults. Staff has found that medical doctors for adult patients are not familiar with pediatric illnesses. Staff at PPCU is continuing to try and determine how best to address this need. During the last few years, the PPCU has carried out the first research funded by Garrahan Children’s Hospital. This research focused on how best to assess health related quality of life for pediatric palliative care patients at the hospital. It is well known that in health related quality of life assessment, some scales have been validated such as the Faces Pain Scale Revised and the Pediatric Quality of Life (PedsQL 4.0). Research has been conducted to understand systemic assessments of symptoms in patients with chronic obstructive pulmonary disease, assessment of symptoms and quality of life in cancer patients, use of opioids in non-cancer patients, palliative sedation and checking of risk factors in patients with osteosarcoma who may require amputation. In conducting this research, a medical doctor specialized in palliative care also provided assistance and guidance. It is important to describe the health system organization in Argentina so the reader can understand the context in which pediatric palliative care is provided. This health system is very complex. There are free public hospitals, health care organizations owned by unions, private Health Maintenance Organizations and private medicine accessible for only a few people in the country who can afford these 410 R.M. Germ et al. services. One of the strengths of the palliative care movement is that it originated in public hospitals. A great advancement was the implementation of post basic interdisciplinary residency programs, but only for adult palliative care, that includes medical doctors, nurses, psychologists and social workers. A lot of efforts have been put in place to try and achieve the same kind of residency for children. The most recent advancement took place in 2009 with the decision of the Ministry of Health of the Government of the City of Buenos Aires to implement palliative care in every hospital under its jurisdiction with a 5-year timeline. This allowed for the competition and subsequent appointment of pediatricians in the other two children’s hospitals in the city of Buenos Aires. It is worthwhile to mention that the second pioneering experience in palliative care took place in Ricardo Gutierrez Children’s Hospital, in the city of Buenos Aires. Since the opening of the first PPCU in 1992, six more PPCUs have been opened in the city of Buenos Aires and the Province of Buenos Aires. Regarding inland Argentina, there are a total of 13 PPCU’s distributed in six provinces. Two of them are located in the city of Cordoba. Besides these units, there are two medical doctors with pediatric palliative care training in two provinces, resulting in some pediatric palliative care services being offered in a total of 15 of the 23 provinces in Argentina. The goal of the pediatric palliative care community is to have a PPCU that receives referrals for every children’s hospital in the country, or at least to identify one person with the drive and passion to develop the special care that children with life-limiting conditions and their families need in areas where there are no pediatric palliative care services. Much of the work in pediatric palliative care, and adult palliative care, would not have been possible without the work of two important palliative care pioneers in from inland Argentina. Both of these pioneers were invited to contribute to this chapter in order to share their experiences in the development of this new pediatric specialty not formally recognized in Argentina yet. The next two sections of this chapter describe their experiences.

22.4 History of the Implementation of a Pediatric Palliative Care Unit at the Victor J. Vilela Children’s Hospital

Rosario is the largest city in the Argentinian province of Santa Fe. Rosario is located 300 km northwest of Buenos Aires, has about 1,400,000 inhabitants and is divided in six districts. Rosario is the center of a vibrant local agricultural economy. As such, it is one of the key cities in South America’s MERCOSUR common market (Argentina, Brazil, Paraguay, and Uruguay). Rosario is not only in the crossroad of intra-MERCOSUR land freight transportation (Brazil > Argentina > Chile), but also the hub for grain moving from the farms to the silos, plants or ports. Rosario is also an ever-growing industrial center, with companies predominantly active in the following sectors: food processing (beef treatment, oil mills), textile, automo- tive, agricultural machinery, petrochemical, iron and steel, and machine tools. The 22 Pediatric Palliative Care in Argentina 411 public health system is organized in a network of sanitary districts, which includes 50 primary care centers, three secondary care hospitals and two tertiary level hospitals. Victor J. Vilela Children’s Hospital is in the group of tertiary care hospitals. It is a multi-specialty hospital and referral center at a provincial and regional level with training programs on pediatric specialties and subspecialties. The hospital has an outpatient clinic that is very important to the community as well as a very efficient emergency room. The hospital provides services on all the clinical and surgical specialties, including the Department of Hematology-Oncology and the Bone Marrow Transplant Unit. The hospital attends acute children, adolescents up to 15 years of age and chronic patients up to 18 years of age. Its priorities are to assist patients without health insurance and to develop promotion, prevention, assistance and rehabilitation activities. The road to the creation of a Palliative Care Unit started with the aim to soothe the suffering and pain of the children and adolescents admitted in the Pediatric Intensive Care Unit (PICU) of Victor J. Vilela Children’s Hospital. The initial concern was to prevent children with terminal cancer from being admitted in the PICU because they were separated from their parents and loved ones, and did not receive any pain relief treatment. In 1997, Dr. Binelli, one of the authors of this chapter, received a scholarship to attend a postgraduate course in the PPCU at Garrahan Children’s Hospital. During this course, she discovered that it was possible to soothe the pain and other distressing symptoms not only of cancer patients but also of other patients with chronic life-limiting conditions. After finishing this course, her first challenge was to try and implement some changes in the PICU at Vilela Children’s Hospital and then to create a Pediatric Palliative Care Unit. At this stage, it was very important to identify and rely on a certified nurse in the PICU with the necessary drive to push the project forward. At the very beginning, the nursing team, doctors and most importantly the pediatric residents were trained on the assessment and treatment of pain with opioids in patients without ventilation assistance such as burn victims, and improve the opioid weaning in patients undergoing the process of ventilation assistance removal. This allowed patients to be treated in hospital wards such as burn and hematology-oncology wards. The training of the health team generated an increase in the number of consultations due to the importance of symptom relief, which was starting to be proven scientifically and practically feasible. Opioids, such as oral an intravenous morphine, started to be used in hospital wards for the treatment of pain. The Head of the Department of Pharmacy joined the team, which facilitated the access to strong opioids as well as compound prescriptions of strong opioids like morphine and milder opiods such as codeine. A hospital vademecum, together with regulations on drug requests, was created in order to keep record of medication consumption. Collaboration with the Department of Pharmacy constituted a milestone in the process of developing palliative care in the hospital, allocating 50% of the hourly load of a certified pharmacist to work only for the Palliative Care Unit. 412 R.M. Germ et al.

At this stage, four people were working together with the goal of developing palliative care services in this children’s hospital. All of team members worked in different departments of the hospital and the team included; a certified nurse, a pediatrician and two certified pharmacist. It was a very hard road, with advances and setbacks, but with a very strong and clear goal. Over the years, the excessive workload, the huge amount of phone consultations and the sharing of work with the PICU resulted in the team’s burnout. In 2000, and after having worked for 4 years uninterruptedly, a formal communication was sent to the Hospital Board stating that it was impossible to continue working in this way. Nine months later, on January 2, 2001, a Palliative Care Unit (PCU) was created, and the team consisted of a certified nurse, a pediatrician with graduate studies in palliative care and a pharmacist. Once the PCU was formed and incorporated to the organization chart of the hospital, different tasks were organized. These tasks included: visits to chronic and oncologic patients together with the Department of Home Hospital Care in order to prevent children from being admitted many times to the hospital, the creation of an attending room with joint admission of doctors and nurses, and the writing of rules and regulations regarding the organization and operation of the PCU and the treatment of pain. The fact that the PCU has a special place consisting of an attending room, an outpatient clinic with five beds with oxygen and central vacuum system and having available beds in the sick ward constituted a very important milestone in its history. Likewise, pain assessment and treatment protocols were created for burned children and for analgesia and sedation in invasive procedures. Moreover, several training courses were planned involving nurses, residents and staff doctors, which triggered an increase in the demand and consumption of opioids and other drugs for the treatment of constipation, spasticity, etc. A medical graduate internship program was created by the PCU as part of its training strategy. Three pediatricians have already completed this program. Because of the increment of workload, the Hospital Board approved the incorporation of two more pediatricians to the PCU in 2004. The presentation and exchange of scientific papers based on the hospital’s experience was very important for the spreading and hierarchization of palliative care in national pediatric congresses and especially in the framework of congresses organized by the Argentine Association of Medicine and Palliative Care and the Latin American Association of Palliative Care. The PCU of the hospital was created as a personal and professional challenge, based on the observation of a hidden demand and need of a different approach for treating children with life-limiting and life-threatening conditions. This was put into practice with interdisciplinary work and resulted in the recognition of palliative care as a right every patient has. Psychosocial workers provide care to individual’s in the PCU on a case-by-case basis. The team works in a matrix structure, supporting the primary health care professionals and putting the emphasis on the sick child and his/her family. The PCU attends inpatients and outpatients in an appropriate environment, centralizing all the consultations with different specialties in only one place. 22 Pediatric Palliative Care in Argentina 413

In summary, the strengths of the PCU at Victor J. Vilela Children’s Hospital are:

• Graduate Scholarship Programs • Support of the Department of Pharmacy • Interdisciplinary team • Providing consultations to Garrahan Children’s Hospital • Nurse training in pediatric palliative care • Resident training in pediatric palliative care • Interdisciplinary meeting attendance • Opioid access and availability • Pediatric and Palliative Care Congress attendance • Incorporation of Palliative Care team into Argentine Pediatric Society.

Weaknesses of the PCU are:

• Some colleagues consider incurable diseases as a failure of medicine, and do not accept palliation • Late referral of patients with severe symptoms • Staff burnout • Even though the hospital has mental health services, the PCU does not have a psychologist • Although the hospital has social work services, the PCU does not have an exclusive social worker • Lack of human resources training on interaction with other health professionals.

22.5 Pediatric Palliative and Home Care in a General Hospital of the Province of Neuquen

The province of Neuquen is located in the west of Argentina, at the northern end of Patagonia. It has a surface area of 94,078 km2, a population of 556,527 inhabitants and a population density of 5.4 inhabitants per kilometer squared [2]. It has an incredible natural beauty with magniﬁcent landscapes stretching from steppes to lakes surrounded by woods and the snow peaks of the Andes. The local economy is based mainly on the exploitation of petroleum and gas, hydroelectric power supply, heavy water production, livestock breeding and tourism. The annual population growth rate is 19.1%, which is higher than the national average. The population under 15 years of age is 32.1%; this percentage is also higher than the national average (27.5%) and slightly higher than the world average (31.5%). Almost one-half of the population does not have access to health insurance (48.7%). The health situation in the province of Neuquen was established by the Provincial Health System, which was created in 1970 and based on a primary health care 414 R.M. Germ et al. program. This Provincial Health System program resulted in an important improvement of the community health situation, especially in a reduction of the child mortality rate. The public health care system is highly decentralized to the provincial level but linked to a network of health care destinations of different levels. Hospital Provincial Neuquen (HPN) Dr. Castro Rendon is the most important health care center in Patagonia. In 1994, when Dr. Marcela Pose (one of the chapter authors) started to work at HPN, children with complex conditions such as cancer, chronic and degenerative illnesses, etc. did not receive global assistance, so they were exposed to a great deal of suffering due to the fact that the health care structure was only designed for acute patients or for promotion and prevention programs. Additionally, the building structure of the hospital was obsolete and inadequate to meet the isolation needs of children with neutropenia; there were eight-bed hospital wards for children, which left no privacy at agonic stages. There was no isolated space to hold an interview with the family of the patient, where they could cry and express their emotions. Pain was poorly assessed and treated and there was almost no record of the importance of symptom control. There was also certain reluctance to symptomatic treatments and the emotional considerations of the patient were not contemplated. The pediatrician staff was reluctant to use opioids due to deeply rooted myths around them. The number of pediatric specialists was very scarce and differentiated services for children did not exist. Under these circumstances, some nurses, the social worker of the Oncology Department, a psychologist and Dr. Pose spontaneously formed a group in order to ﬁnd alternatives to modify the prevailing establishment. This newly formed group started to hold meetings with the parents of pediatric oncologic patients, to improve the nursing services and to view the child and his/her family on a global basis, dealing with emotional, social and spiritual aspects. The group decided to have weekly meetings, to start training programs for its members by attending courses and completing internships at Garrahan Children’s Hospital, to incorporate pain assessment as the most important symptom, to include palliative care issues in the nurse and hospital teacher training programs, to organize workshops, to develop undergraduate and graduate courses and to participate in congresses and seminars. During the weekly meetings, case studies were discussed with input heard from staff of different specialties. In spite of the fact that this group was not formally recognized by the board of HPN, it continued to grow stronger. Finally, in 2000, the constitution of the Pediatric Palliative Care Unit (PPCU) was formally approved. By then, the group had been consolidated after long years of hard work.

22.6 The Creation of Palliative Home Care

In 1995, a mother of one of the PPCU patients asked the staff to continue the treatment of her son at home since he presented a new relapse without the possibility of a cure. She wanted to take him home after long years of struggling and many months 22 Pediatric Palliative Care in Argentina 415 of hospitalization. With no further formality but the authorization of the Head of PPCU and the help of nurses, stretcher-bearers, ambulance drivers, nutritionists, pharmacy staff and receptionists, the Unit began its first experience in Palliative Home Care for children with terminal cancer. About 5 years later, after 2000, the PPCU noticed that the pattern of the children’s illnesses had changed, because most of the admitted patients were children with chronic conditions for whom hospital-based care was not the most adequate choice. This kind of assistance entailed long hours of waiting and wandering within the hospital, transportation expenses, job losses, depersonalization and a feeling of lack of protection from the hospital staff. Likewise, other health care centers were affected. Examples of how they were affected include: the number of doctor’s appointments doubled, there were unnecessary hospitalizations, sometimes hospitalizations were extended due to hospital acquired infections, and sometimes hospitalizations were shortened due to the need to free up beds. There was neither training on chronic patients discharge standards nor follow-up coordination. Under these circumstances, it was necessary to create a different program for the PPCU. Sometime later, the Unit came up with a project of Palliative Home Care, which was approved by the Board of the HPN. The PPCU formally started to work on this new project on June 1, 2002, working within its existing infrastructure, full time human resources and statistical records. Over the years, many advantages of a home care program were observed. From the patient’s perspective, home care allowed for the patient to keep his/her social role, allowed the patient to live in his/her own environment feeling safe and confident, and allowed the patient to keep his/her intimacy, toys and pets. From the family perspective, home care allowed for the family to live in a familiar environment, helped prevent the family from falling apart, and allowed the family to take the role of main assistant to the child. The health system also benefited from this new home care project by offering comprehensive assistance, with better use of resources (beds) and avoidance of long hospitalizations. Home care brings a better quality of assistance, especially because the assistance is focused on the child’s needs. The PPCU continued growing not only in terms of human resources (secretary, chiropractor, pediatrician, psychologist, nurse), but also in terms of adding services such as bereavement services, undergraduate and graduate training programs (extended to the whole province in the public and private sector).

22.7 Organization of Palliative Home Care Teams: A Management Perspective

The reason for the creation of a PPCU was to guarantee that children with terminal conditions receive their rights to dignity, autonomy, best treatment available and symptom relief. From the management and service organization point of view, a health care center focused on relieving the suffering of children with chronic, progressive and incurable diseases is necessary. This concept stems from the term, 416 R.M. Germ et al.

“clinical medicine of the individual” coined by G. Campos [3] and refers to the idea that a human individual will always be biological, subjective and social, putting aside the traditional medicine, which is not enough to approach patients with complex needs and demands. Experiences of the PPCU illustrated the importance of creating a referral team consisting of one pediatrician specialized in palliative care, two nurses, one social worker, one psychologist, (all trained in palliative care) and health transportation staff. Chiropractors, occupational therapist, music therapists and pharmacists may also be added to the team. The process starts with a referral from the child’s general pediatrician or specialist, who asks the services of the referral team (vertical). This team receives support from different specialties as seen in a matrix structure (hori- zontal). An admission interview is then held and an interdisciplinary action plan is designed, which is especially tailored for each child (therapeutic project). Current and potential problems, along with priorities and interdisciplinary networks, are set by the interdisciplinary team. The interdisciplinary team addresses access through variable frequency of home visits, according to the moment of intervention (e.g., if the child’s illness stage is beginning, relapse, agony, or death). The child’s pediatrician maintains the role of a primary care physician but the specialist can join the home team whenever necessary thus making it a flexible service. The interdisciplinary home team is responsible for treating the child, but also encourages the child and family to take care of themselves whenever possible, in the biological, emotional and social aspects. Finally, the aim of the team is not the cure of the child’s disease but an improvement in life quality by working globally with an interdisciplinary and intersectorial team. As a conclusion, and based on these three experiences, we can say that the development process of palliative care entails three main stages: the first stage consists of spreading and awareness of the importance of palliative care among health professionals and the community, the second stage refers to teaching and training, and finally the third stage is the beginning of the research work.

References

1. Lanken PN, Terry PB, DeLisser HM, Fahy BF, Hansen-Flaschen J, Heffner JE, Levy M, Mularski RA, Osborne ML, Prendergast TJ, Rocker G, Sibbald WJ, Wilfond B, Yankaskas JR (2008) Ofﬁcial American Thoracic Society Clinical Policy Statement: palliative care for patients with respiratory diseases and critical illnesses. Am J Respir Crit Care Med 177:912–927 2. Dirrecciones Provinciales de Estadistica (2001) Neuquen: Censo 2001: Resultados provinciales. INDEC. http://www.indec.mecon.ar/censo2001s2_2/ampliada_index.asp?mode=58. Accessed 2011 3. Campos GWS (2001) Gestión en salud. Lugar Editorial, Buenos Aires Chapter 23 Pediatric Palliative Care in Brazil

Patrícia Lago and Jefferson Piva

Abstract This chapter discusses the main dilemmas and difficulties related to the end of life decisions in children with terminal and irreversible diseases, as well as, presents a rational sequence for delivering palliative care to this pediatric group in Brazil. Information from this chapter was gleaned from the Medline and Lilacs data bases. We searched for the terms including “end of life”, “palliative care”, “death” and “terminal disease” looking for articles published in the last few years. We selected the most relevant studies that focused on pediatric patients, we supplemented the information from these studies with the author’s own studies in this field. The actual Brazilian Ethics Code (2010) was also analyzed regarding end of life practices and palliative care to be offered to patients with terminal diseases. Lack of knowledge and insufficient specific training coupled with legal concerns are the main reasons that end of life decisions do not fit the children’s needs in Brazil. Another issue is that treatment tends to be centered on the medical opinion with scarce family participation. The actual Brazilian Medical Code (2010) supports end of life decisions given that they are obtained in a consensual manner with active family participation. Honest dialogue with the family regarding the diagnostic, prognostic, treatment and palliative care measures should be established gradually, to define the best strategy to fit the child necessities in the last moments of life. Treatment foremost centered on the child’s welfare, coupled with family participation, is the basis for successful palliative care for children with terminal diseases in PICU in Brazil.

Keywords Brazil · Palliative care · Death · Pediatric intensive care · End of life decision

Give “life” to the days still left instead of add “days” to life that remained. Jefferson Piva

P. Lago (B) Department of Pediatrics, Universidade Federal de Ciencias da Saude de Porto Alegre (UFCSPA), Porto Alegre, Brazil Department of Pediatrics, Pediatric Intensive Care Unit – Hospital de Clínicas de Porto Alegre, Porto Alegre, Brazil e-mail: [email protected]

C. Knapp et al. (eds.), Pediatric Palliative Care: Global Perspectives, 417 DOI 10.1007/978-94-007-2570-6_23, C Springer Science+Business Media B.V. 2012 418 P. Lago and J. Piva

23.1 Introduction

Evolution of medicine over the past 50 years has changed the prognosis and survival of many childhood diseases. The incorporation of new technologies, the use of increasingly effective treatments, the development of several pediatric subspecialties together with the proliferation of Pediatric Intensive Care Units (PICU) and Neonatal Intensive Care Units (NICU), has allowed children to survive who until recently were considered not viable and may have died early. In parallel, there have been a group of children with chronic diseases characterized by serious sequelae, who are technology dependent and often have a reduced life expectation and quality of life [1–3]. Many of these children end up experiencing repeated hospitalizations, including during the final phase of their illnesses that precedes death. Currently, almost all childhood deaths occur in a hospital’s PICU or NICU, followed to a lesser extent by the surgery center, emergency room, oncology unit and general pediatric wards [1, 3, 4]. While caring for a population at high risk of death, PICUs throughout the developed world have shown a marked decline in their mortality rates, which today are around 4–10% [1, 2, 4–8]. The same effect is observed in Brazilian PICUs, where mortality rates are around 10% depending on the type of patient who is assisted [9–12]. In Brazil there are approximately 2,000 PICU beds that are generally located in the south and southeastern regions of the country. Care provided in the PICU is funded by both federal funds (70%) and private funds (30%). The vast majority of deaths occurring in European, Canadian and American PICUs, have some type of life support limitation (e.g., removed or not offering exceptional treatment or even, no resuscitation), denoting death as expected and attributed to the natural course of the terminal state of disease refractory to treatment [6–8]. The proportion of life support limitation in Brazilian PICUs has fluctuated between 35 and 55% over the past 5 years [9–12]. However, it has been shown that many children dying from irreversible diseases when admitted to PICU are given curative treatment (in which case a cure is not reachable), disregarding palliative care and the children’s real needs in the moments before the end of life [6–13]. Difficulty in the medical management of children during the final stage of life is even more pronounced in our midst, with three main justifications [6, 9–12]. First, there is a lack of education and training for both undergraduates and medical residents in dealing with care at the end of life, which includes foundations of bioethics, communication skills and care strategies. Consequently, pediatricians, neonatologists and pediatric intensivists resent the lack of training, maintaining its performance in extreme medical curative or even in cases where the practice of palliative care appears to be ineffective. Second, in spite of palliative care having been elected by the World Health Organization as a priority for over a decade [14], its definition as an area of activity for various medical specialties in Brazil (e.g., geriatrics, oncology, medical clinic, pediatrics and others) is only now being discussed. Third, even today there is ignorance about palliative care. Some doctors question ethical and legal support to provide palliative care and the limitation of treatment for patients in the end-stage of disease. 23 Pediatric Palliative Care in Brazil 419

23.2 Needs of the End of Children’s Life and the Provision of Palliative Care

Several reports of families whose children died in a PICU describe the difficulties experienced in the last moments of life for their children. Meyer et al. described six priorities mentioned by 56 parents of children whose children died in three PICUs in the United States [15]. The six priorities are: complete and honest information; regular and easy access to a doctor; coordinating communication; emotional involvement; preserving the integrity of parent-child relationship and spiritual support. These results are similar to a recent study of 34 parents of children who died in two PICUs in Porto Alegre [16], Brazil which highlighted among other things (a) lack of accurate information about the disease and prognosis, (b) decisions taken unilaterally, based solely on medical opinion without parents having had the opportunity to discuss the therapeutic options for use on their children, (c) hostile environment with too much technology and lack of human solidarity; and (d) routines overly strict and immutable disregard the minimum needs of the child in this situation at the end of life (e.g., banning the visit of a little brother or a friend from school), among others. The current concept of palliative care according to the World Health Organization is, “a focused approach to quality of life for both the patient and their families facing problems associated with diseases that endanger life. The action seeks to preventing and relieving suffering through the early recognition of a careful and accurate assessment and treatment of pain and other symptoms, whether physical, psychosocial or spiritual” [14]. In relation to palliative care for children with chronic diseases and their families the World Health Organization emphasizes that they should be offered, “total active care for the body, mind and spirit, as well as support for the family. Palliative care for children should begin when the chronic illness is diagnosed, and increased in frequency and scope as the disease progresses while concurrent with curative treatment. Health professionals should assess and alleviate the physical stress, psychological and social development, requiring a multidisciplinary approach that includes family and even the use of available resources in the community.” A crucial aspect in the design of pediatric palliative care is that the child has numerous differences from the adult, such as [17–20] (a) children present with different diseases, peculiar to each age group and therefore have special needs, (b) heavy affective dependence coupled with a personality which is still too imma- ture to deal with the consequences of a serious, limiting and fatal disease, (c) the physiological mechanisms of compensation still under development, (d) different reactions to pain and anxiety, and (e) pharmacokinetics and metabolic needs differ by specific stage of development. Therefore, the use of the same tenants of palliative care for adults are neither applicable nor will meet the needs of pediatric patients [17–20]. Until recently it was understood that the use of palliative measures was only considered applicable in the eminent moments before death [1, 4, 9, 21, 22]. Thus, 420 P. Lago and J. Piva curative treatment and palliative care were at opposite ends of the treatment continuum and were considered to be mutually exclusive. Through gains in knowledge and familiarity with the care of children with technological dependence, suffering from debilitating and progressive diseases, as in acute cases, but refractory to therapy, it has become clear that these treatments are complementary and can be integrated [13–21]. It has been shown that even in developed countries, palliative care is requested later in the course of illness and by a small percentage of applicants. In a study involving children under 1 year that died in either a PICU or NICU palliative care was requested and provided about 2.5 days before death and to less than 15% of children who died [21]. Bearing in mind these difficulties, in 2000 the American Academy of Pediatrics warned and emphasized that, “general pediatricians and their pediatric subspecialties should be familiar with and trained to be able to provide palliative care to children in their care” [17]. The American Academy of Pediatrics and the World Health Organization suggest that the model that should be applied to children simultaneously administers curative and palliative care with a concern for the physical, mental and spiritual aspects of care. This encompasses the multidisciplinary care that includes physicians, nurses, social workers, chaplains, physiotherapists and occupational therapists [14, 17]. The goal is to offer the best quality of life for patients and their families, consistent with the best that can be offered by medicine, and that also attends to children’s values and needs [14, 15, 17–20]. It should be emphasized that palliative care extends beyond the moment of death of the child, because the family, in the days and months following the death of the child, will need strong support. In the study mentioned above [16] and others [23–26], parents reported feeling welcomed and comforted by having the chance to return to the hospital and discuss with the medical staff details still obscure related to the loss of their child.

23.3 Ethical Support for Therapeutic Efforts Limitation in Patients in End Stage Irreversible Disease

Even today in Brazil, some physicians express their fears and fantasies about the legitimacy and legal support to limiting the provision of curative therapy for patients in the end-stage of an irreversible and progressive disease [27]. Because they consider that the limitation of therapeutic efforts in that group of patients could constitute a violation to some articles of the 1988 code of medical ethics, also found in the 2010 code, such as Article 1 (“The physician shall not cause patient harm through action or omission that may be characterized as incompetence, recklessness or negligence”) and Article 32 (“The physician shall not cease using all available means of diagnosis and treatment, scientiﬁcally recognized in their power, in favor of the patient”) [28]. Of course, “in favor of the patient,” described in Article 32, refers to, “the beneﬁcial interventions for that patient at that stage of the disease and not a compulsory act of offering everything that’s available.” 23 Pediatric Palliative Care in Brazil 421

To resolve these and other questions, the current Brazilian Code of Medical Ethics (2010) made explicit in various articles and sections the need and ethical duty of the physician to provide palliative care to patients suffering from incurable and terminal illness. Examples can be found in Chapter 1 – Item XXII (“In clinical situations irreversible and terminal, the doctor will avoid the performance of unnecessary diagnostic and therapeutic procedures and provide the patients under their care all appropriate palliative care”); Article 36 second paragraph which forbids the doctor to abandon patients under their care – “Except for a just cause, communi- cated to the patient or their relatives, the doctor will not abandon the patient because this patient bears chronic or incurable illness and will continue to assist him even if for palliative care”, as well as in Article 41, where it is emphasized that, “the physician is prohibited to shorten the patient’s life, even if requested by him or his legal representative.” But, stresses in a single paragraph that “In cases of incurable and terminal illness, the physician shall provide all available palliative care without taking unnecessary or willful diagnostic or therapeutic actions, always taking into consideration the wishes of the patient or, failing that, his legal representative” [28]. We conclude, therefore, that when treating patients in the end-stage of a serious and irreversible disease is the duty of physicians to avoid the therapeutic obstinacy as well as provide palliative care. Moreover, the breach of these guidelines in this situation represents a lack of ethics. It should be highlighted that both in Article 41 quoted above, as in several others (Articles 24 and 34; Item XXI) of the 2010 current medical code it is stressed that this is a shared decision with the patient and family (e.g., shared as in the case of children and incompetent patients), and it is expressly forbids decisions focused exclusively on the opinion of the medical team. Such decisions must be properly recorded in the patient’s medical record.

23.4 Planning and Deﬁnition of Palliative Care in Pediatrics in Brazil

Palliative care in pediatrics should be offered and gradually adjusted to the needs imposed by the disease and its treatment (evolution, complications, limitations), and should be individualized for that child (adjusted by the values and aspirations of that binomial family/child). Following certain steps in the planning and implementation of palliative care in pediatrics, has been applied in Brazilian university services [29]. In the planning and establishment of pediatric palliative care, some key steps must be adequately overcome in order to obtain full success. These steps are highlighted below (Fig. 23.1).

23.4.1 Understanding the Disease, the Available Treatment and the Possible Limitations

Ultimately, stating or estimating the probability of cure of the child’s disease is important. The various prognostic indicators have been shown to be very sensitive 422 P. Lago and J. Piva

1 – UNDERSTANDING THE DISEASE AND ITS LIMITATIONS (Healing Palliative)

Physicians Family

2 – DEFINITION OF OBJECTIVES AND INITIATIVES

Physicians Family

Considering the prognosis, treatment options and values of the binomial family/child

3 – PROVIDE INDIVIDUAL NEEDS AND ANTICIPATED EVENTS

END OF LIFE INTERVENTION THERAPEUTIC DECISIONS AND ENVIRONMENT SPIRITUAL Futile (testing, PRIORITIES POSSIBLE Sympathetic, SUPPORT monitoring (analgesia, COMPLICATIONS brotherly, Psychological, excessive…) sedation…) privacy social assistance

Fig. 23.1 Planning and definition of palliative care in pediatrics and specific to be applied to groups of patients; however, they have no specificity or safety when applied to only one individual [1, 10, 13, 18, 29]. The degree of reversibility of a disease is based on objective data (e.g., computed tomography, pathology, etc.) and in subjective aspects (response to treatment, clinical stage, prior experience, prognostic indicators and reports of similar cases in the literature) [10, 22, 29]. From that information, the medical team establishes a consensus about the potential reversibility (or not) of that particular patient’s disease [10, 13, 22, 29]. The consensus about irreversibility is often a slow process that is eventually achieved by the child’s medical team. Antagonistic information and conflicting perspectives by members of the medical team regarding therapeutic possibilities can be a divisive factor and cause much anxiety that will influence the patient’s treatment path, which can be lengthy. It is important that while the medical team is working towards consensus, this environment of uncertainty should not be extended to the family [10, 22, 29]. As consensus is being established within the medical team, the family is increasingly involved in decision making through open, objective and calm discussion. Regardless of educational level, the family wishes to be heard, to understand, and participate in decisions regarding the end of life of the child. However, the family (as it has occurred with the medical group) needs time and hard evidence to convince 23 Pediatric Palliative Care in Brazil 423 them that the child’s situation is irreversible and non-responsive to treatment or at the end-stage of disease. To guide this process, the medical staff should maintain an environment of trust, respect, solidarity which are all conducive to understanding. It is time to listen too, responding in an objective, straightforward and most simple way possible to the family’s questions, avoiding technical jargon and statistical imprecision which does not help. It should be clear that each person or family has their time of conviction [10, 13, 15, 22–26, 29]. At this time conflict is almost the rule instead of the exception. Not surprisingly, anger and desolation are sent alongside the bad news. That feeling is fleeting and transitory, and may extend to the medical team who may respond with aggression or distance from a possible change of behavior in family members [10, 13, 15, 16, 23–26, 30]. To overcome the discomforts and challenges of this crucial and del- icate moment, the medical team should show solidarity and be friendly, avoiding responding to provocations by keeping the focus of discussion always in search of the best to be done to meet the needs of that child in that situation. As the family realizes that this is the purpose and motivation that drives the medical team about the care of their child, the relationship gradually changes to an environment of trust and complicity [10, 22, 29, 30]. It is acceptable and predictable that ebbs and flows will occur in the understanding of the family about the irreversibility of the child’s disease. The evolution is slow, requiring the medical team to demonstrate the stage of illness many times through examinations or medical evidence. When there is no such understanding, the medical team cannot move the discussion to the stage of setting priorities for treatment (curative and palliative) [10, 22, 29].

23.4.2 Deﬁnition of Objectives and Medical Interventions

The family is facing the bleak irreversibility of the child’s disease and imminent death. Obviously they will need much support and help in the discussion of therapy (curative and palliative) to be offered in this new reality [10, 15, 22–26] (Table 23.1). A common mistake is the decision to limit life support to be adopted unilaterally by the medical team, without family involvement in decision making. The paternalistic characteristic of the Brazilian medicine favors this type of situation. Studies of Brazilian family participation in the decision making process involving adult and pediatric patients in the final stages of life, ranged from 8 to 50% [9–12]. An example of this neglect has been cited in testimony collected in a recent study involving two PICUs in Porto Alegre [16]. ...In fact they asked me but were communicating. After they explained to me, they asked me if I had any objections ...I was not really asked, but told what would be done... On the other hand, the medical team should avoid falling into the other extreme when applying the principle of respect for autonomy. The vast majority of families really want to be heard (e.g., have a voice) but in no way do they want to have control of the situation and be responsible for the final definition for each therapeutic 424 P. Lago and J. Piva

Table 23.1 Priorities for the end of life represented by 56 parents of children who died in PICUs in the United States

Priority Sample quote

1. Complete and honest information “We are handling a situation that we have no idea where it is going.” 2. Regular and easy access to doctor(s) “Please set a regular schedule so that we can talk and be received by doctor(s) assistant(s).” 3. Coordinating communication “There are many doctors explaining different things.” 4. Emotional involvement and signs of “We need to feel that the team really cares solidarity by the team and that it is not just a job.” 5. Preserving the integrity of the parent-child “Manifest compassion for the needs of relationship parents and their son.” 6. Spiritual support (Faith) “At the moment, I doubted much of my faith.”

Modiﬁed from Meyer et al. [15] measure [15]. The ability of the medical team to conduct this discussion can mean the difference between the family’s peace of mind (understanding that the best in their scope had been offered in the last moments of their child’s life) or permanent feelings of guilt (from feeling responsible for the suffering and death of their loved one) [10, 22–26, 29]. It is up to the medical team to conduct the discussions through an open dialogue in a climate of trust, solidarity and understanding where the advantages and disadvantages of each treatment option are presented [10, 13, 15, 17, 29]. It is essential that medical personnel listen and identify priorities and values that the family has and adopts them, either consciously or unconsciously, to guide and motivate the medical team’s decisions. With that information the medical team can vote and suggest the most appropriate treatment options that meet the needs of that binomial family and child. Thereafter, begins the transition and completion of curative treatment and palliative care [8, 10, 23–26, 29, 30–34].

23.4.3 Provide Individualized Needs and Anticipated Events

Taking into account the stage of disease, meaning the evolution, possible complications, prognosis in short and medium run, adjusted to the expectations and values of family and child; palliative care is instituted to meet the following priorities.

23.4.3.1 Identify and Delete Futile Interventions Futile interventions are those which do not contribute to controlling the disease, nor to the improvement in quality of life [8, 10, 13, 18, 21, 29, 33–35]. Interventions should therefore be judged on a case-by-case basis by asking questions such as: What is the need for daily laboratory tests? What is the justiﬁcation for invasive 23 Pediatric Palliative Care in Brazil 425 monitoring? Why measure vital signs every hour on lost sleep? Inotropes and vaso- pressors are really needed right now? What is the beneﬁt of administration of a broad combination of antibiotics, antifungals and leukocyte-stimulating factors?

23.4.3.2 Therapeutic Priorities Define the therapeutic interventions, such as curative and palliative, which are truly appropriate in each medical scenario. For example, a patient may indicate a priority for early tracheostomy to avoid prolonging the use of tracheal tube and the need for excessive sedation. There is no prior definition of what action is effective or futile. This definition is made individually considering all the factors related to the disease (stage and the benefit of that intervention in terms of healing, retardation of development or impact on quality of life) combined with the expectations of family and child. As the “care” becomes the priority it is clear that analgesia and sedation gain special attention [4, 8, 10, 13, 18, 19, 29, 35–37]. When performing any intervention that promotes pain (e.g., exchanges of drains/catheters, changing position, tracheal suction) a supplementary dose of another painkiller of short duration may be added (e.g., ketamine). Some diseases in advanced stages (e.g., tumors with bone metas- tases) generate growing demands for analgesia. Ethically, morally and legally, we cannot accept that the fear of side effects prevents the use of increasing doses of opioids in this situation [7, 8, 10, 13, 18, 19, 24, 34–38].

23.4.3.3 Advance Rulings Regarding End of Life and Possible Complications Physicians with some experience in caring for critically ill children can help predict the children’s complications or manifestations of their own evolution. The medical team should discussed in advance with the family the approach to be adopted in such eventualities, register that treatment plan in the medical record and, arrange with the doctor on duty the handling of situations such as the occurrence of seizures, worsening of the respiratory and/or apnea, gastrointestinal bleeding etc. [8, 10, 29, 31, 33, 34, 39, 40]. The documentation of advanced planning was also a recommendation contained in the Brazilian code of medical ethics policies regarding the end of life (do not resuscitate orders, not taking a given treatment). The code of medical ethics notes that end of life plans must be properly recorded in medical records [28]. Likewise, the medical record must also include logged measures to be adopted in lieu of these procedures [e.g., in case of worsening dyspnea, install non-invasive ventilation (with a previous deﬁnition in relation to the adjustment of its parameters) associated with the increase in dose of opioids to decrease the discomfort and facilitate the cycling of noninvasive ventilation [7, 8, 10, 28, 29, 36, 39, 41].

23.4.3.4 Changes in the Environment Clearly this is a moment of great stress for the child, family and the entire team involved in care. Keeping the family in a room with the utmost privacy, with the 426 P. Lago and J. Piva possibility of natural lighting and ventilation, away from the noise from the PICU and its equipment is a priority [4, 13, 15, 16, 18, 24, 31–33, 38]. Facilitating the entry of objects valued by the child (e.g., video games, computer with Internet, portable sound) as well as encouraging visits and interaction with family members and keeping the child out of bed are highly valued by the binomial family and child [8, 17, 24, 31, 38, 42]. In Brazil, this practice becomes difﬁcult to enforce, since few PICUs have special rooms for patients, and the wards are always crowded, with a shortage of pediatric beds in the large medical centers.

23.4.3.5 Involvement of the Multidisciplinary Team Palliative care is based on the active presence of a multidisciplinary team that will be larger or smaller according to each location and status [4, 15, 17, 18, 20, 21, 31]. However, besides the doctor(s) and nurse(s) who provide care to the child, the active participation of social service, psychological support and/or psychiatric care, spiritual support (support groups, priest, chaplain, rabbi), occupational therapist, educator (music therapy, recreation), among others is also required [4, 15, 17–19, 23, 42]. Over time, the multidisciplinary team becomes part of a “big family”, so their visits of solidarity and support to the family and child assume enormous importance and are anxiously awaited. Each of the members of the multidisciplinary team should have an exact notion that any small gesture in that time acts as an energy source for this family and child and will forever be remembered [15, 23–25, 33–35]. The testimony gathered below in a recent study involving parents of children who died in two PICUs in Porto Alegre demonstrates clearly the importance of a receptive and supportive attitude of the PICU team [16].

...the nurses who were there, very sweet, assisted and helped me, and it was a difﬁcult time ...but their care there was what helped me most ...

On the other hand, being unprepared to give bad news, difﬁculty of dealing with the complexity of the medical situation, associated with lapses in conduct or behavior may have an unimaginable relevance, often leaving perennial marks on the family. An example of this lack of preparation was reported in testimony collected during the interviews with parents of children who died in two PICUs in our country [16].

...They entered and left the room as if we were not there. And on the day of death was the same. They gave the news, they looked at us, said they had no more to do ...turned away talking about other issues ...

It is therefore clear that the fragility of the family in this time of loss is keen to solidarity, respect and comfort by all the staff from the PICU. Thus, anyone entering the room, including the cleaning staff, nutrition, nurses, doctors, lab, x-ray, etc., must present an attitude that reﬂects solidarity, respect and spiritual support [14, 17–19, 23, 42]. 23 Pediatric Palliative Care in Brazil 427

23.4.3.6 The Child Facing the Disease in Its Terminal Phase We have learned that adults “regress” when affected by serious diseases, appear needy, insecure and highly dependent on their partners and family members. The insecurity and dependence on family is a characteristic fact of children and obviously this situation reaches very high levels [38–42]. On the other hand, every child has a peculiar way of interacting with their environment. Instead of dialogue, interactions may manifest themselves through gestures, games and attitudes. Thus, as children are subjected to a series of medical assaults, such as venipunctures/arterial drains/tubes, receiving mechanical ventilation, and as they are observing all around being circumspect (including parents) they have a clear understanding that “something is not right” [8, 19, 24, 31, 38, 39, 42]. Within the child’s universe, the child starts to interact less and less, which even inﬂuences their nutrition, they become passive facing pain (suffering more “not to appear feeling pain”), will not cooper- ate with treatment and often assume it to be their fault for “something not being well.” This vicious cycle must be avoided and modiﬁed [8, 19, 24, 28, 29, 43, 31, 36–39, 42]. The child’s and family’s environment should be as supportive and positive as possible. Parents, family and the entire team must be sources of trust and spiritual support and solidarity. We have witnessed that children involved in a supportive environment surpass with courage and dignity the hardships of the last moments of life. They allow interaction and have active behavior until the last moments of life [14, 17, 18, 19, 23, 31, 33, 42].

23.4.3.7 Supporting the Family After the Death of the Child This is one aspect of palliative care that has received little attention, but several reports in the literature demonstrate the great need for support that these families have at that moment that their world has crumbled [15, 17, 23, 25]. In this study, 34 parents of deceased patients were interviewed for over 6 months in two PICUs in Porto Alegre. We found that most parents reported that (a) they were comforted and valued the chance to revisit the death of their children with doctors that had attended (b) the interview we conducted with them served to help them better understand and to overcome mourning (c) to understand this type of initiative as a demonstration that the “best was done for their child”, and (d) even though having gone through this terrible experience, parents believe they should also give a contribution (e.g., such as participating in the study) to improving the care of children in the ﬁnal stages of life [16]. After death, special consideration should also be given to the medical staff. After a few days, we recommend a staff meeting allowing everyone to express their feelings and criticism of the care and treatment that was delivered to the child. This meeting is meant to help overcome mourning, as well as allowing adjustments and implementations in palliative care. If there is a Committee on Bioethics and/or Palliative Care in the Hospital, it is strongly recommended to coordinate and actively participate in this meeting revaluation [14, 18, 20, 21, 25]. 428 P. Lago and J. Piva

23.5 The Challenges of the Palliative Care in Pediatrics in Brazil

The success of palliative care for children is based on a treatment centered on their desires, given the organic needs caused by their disease, as well as their emotional needs and individual values. To this end, the doctor (the team leader) should have the ability to foster an environment of solidarity and trust, which encourages family involvement in the progressive deﬁnition of and participation in each stage and treatment decisions. Even managing a condition in which cure is often unattainable, the physician who provides palliative care has the opportunity to minimize the consequences of disease through treatment adjusted to the needs of that child and this will be forever recognized for the family. In Brazil, despite the signiﬁcant progress seen in the PICU, palliative care is still incipient and offered only in those moments just before death. Brazilian Pediatrics Society, along with the Brazilian Intensive Care Association have worked together with universities and hospitals qualifying for professional health care. This is only the beginning of a long road that lies ahead. It is essential to recognize this problem by conducting research with intensive care professionals, to ensure that not only the children with acute illnesses may have an excellence treatment, but also children with terminal illness, whom the goal must be comfort and dignity at the end of life.

References

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34. Carlet J, Thijs L, Antonelli M, Cassel J, Cox P, Hill N et al (2004) Challenges in end-of-life care in ICU. Statement of the 5th Internacional consensus conference in critical care: Brussels, Belgium, April 2003. Intensive Care Med 30:770–784 35. Gavrin J (2007) Ethical considerations at the end of life in the intensive care unit. Crit Care Med 35(Suppl):S85–S89 36. Hewitt M, Goldman A, Collins GS, Childs M (2008) Opioid Use in palliative care of children and young people with cancer. J Pediatr 152:39–44 37. Anand KJ, Willson DF, Berger J, Harrison R, Mesert KL, Zimmerman J et al (2010) Tolerance and withdrawal from prolonged opioid use in critically ill children. Pediatrics May;125(5):e1208–e1225 38. Kersun L, Shemesh E (2007) Depression and anxiety in children at the end of life. Pediatr Clin N Am 54:691–708 39. Ullrich CK, Mayer OH (2007) Assessment and management of fatigue and dyspnea in pediatric palliative care. Pediatr Clin N Am 54:735–756 40. Wusthoff CJ, Shellhaas R, Licht DJ (2007) Management of common neurologic symptoms in pediatric palliative care: seizures, agitation, and spasticity. Pediatr Clin N Am 54:709–733 41. Munson D (2007) Withdrawal of mechanical ventilation in pediatric and neonatal intensive care units. Pediatr Clin N Am 54:773–785 42. McSherry M, Kehoe K, Carroll JM, Kang TI, Rourke MT (2007) Psychosocial and spiritual needs of children living with a life-limiting illness. Pediatr Clin N Am 54:609–629 43. Garcia PC, Eulmesekian P, Branco RG, Perez A, Sffogia A, Olivero L, Piva JP, Tasker RC (2010) External validation of the paediatric logistic organ dysfunction score. Intensive Care Med 36:116–122 Chapter 24 Pediatric Palliative Care in Chile

Chery Palma Torres, Natalie Rodríguez Zamora, and Lea Derio Palacios

Abstract In Chile, the infant mortality rate is 7.8 per 1,000 live births and each year around 800 children aged 1–15 years die from various reasons such as trauma, violence, cancer and other life-limiting illnesses. Currently, palliative care (PC) is organized in pediatric hospitals, speciﬁcally in oncology units. However, it has been increasingly recognized that there is a need to develop PC units to provide care to children with other conditions. Cancer is the second leading cause of death in children between 5 and 15 years in Chile. It is estimated that there are 520 new cases of child cancer annually and of these, 85% are treated in the public health system. In 1988 the Children’s Cancer Program (PINDA) was started, dependent on the Ministry of Health, which works in a cross country network. The strategies for diagnosis, treatment and appropriate follow-up of children in the program have yielded an overall survival of 70%; however, despite this 30% of children die from disease progression. Since 2003, this group has access to a multi-care PC model which is given as a continuum of care throughout the progression of the disease, without referring patients to another team that does not know the patient or his/her family. The current challenge is to develop this type of care in other clinical situations, based on the experience gained in pediatric oncology, using the platform that delivers the public health system to ensure quality of service and fairness.

Keywords Chile · Palliative care · Pediatrics · National program · Oncology · Life- limiting illnesses

24.1 Introduction

In Chile the proﬁle of diseases affecting the population has changed as a result of its progressive aging, changes in life habits and conditions of work. It is considered that the country is currently going through an epidemiological transition. The infectious diseases that caused high mortality rates in the 1960s have now been controlled. On

C.P. Torres (B) Hospital de Niños Roberto del Río, Independencia, Santiago 8320064, Chile e-mail: [email protected]

C. Knapp et al. (eds.), Pediatric Palliative Care: Global Perspectives, 431 DOI 10.1007/978-94-007-2570-6_24, C Springer Science+Business Media B.V. 2012 432 C.P. Torres et al.

Fig. 24.1 Chile population distribution (National Institute of Statistics)

the other hand, life expectancy at birth is on average 75 years for men and 82 years for women (Fig. 24.1). This has produced an increase in the number of individuals that suffer from “non-communicable chronic diseases” which require complex care and will require the attention of multidisciplinary health teams capable of providing palliative care (PC) [1, 2]. Pediatrics has produced major advances lowering the infant mortality rate to 7.8 per 1,000 live births, similar to that of more developed countries. Cancer is the second leading cause of death in children between the ages of 5 and 15 years, and it is estimated that 520 new cases of child cancer are diagnosed each year. Eighty-ﬁve percent of these cases are treated in the public health system via an organized network of care called “PINDA” (“Programa Nacional Infantil de Drogas Antineoplásicas”), the national children’s cancer program. These children have a high probability of cure depending on the type of cancer, prompt diagnosis, and the treatment received. However, approximately one-fourth of them will die from the progression of the disease. These children beneﬁt from the Program for Pain Relief and Palliative Care (PR and PC) developed by the Ministry of Health of Chile, detailed later. However, palliative care programs have not been formally implemented for pediatric diseases other than cancer [2, 3]. 24 Pediatric Palliative Care in Chile 433

24.2 General Description of Chile

24.2.1 Geography and Climate

Chile is located on the southwestern coast of South America. It has territories in three continents, America, Oceania (Rapa Nui), and Antarctica. Its continental length is approximately 4,200 km and 8,000 km when including Chilean Antarctica. The national territory occupies a total area of 2,006,096 km2. It borders on the north with Peru, to the East with Bolivia and Argentina, to the West with the Paciﬁc Ocean, and to the South with the South Pole (Fig. 24.2)[4, 5].

Fig. 24.2 Geographic location of Chile 434 C.P. Torres et al.

The Chilean territory is characterized by its great variety of landscapes, but it is still possible to distinguish three big geological units: the Andes Mountains (to the east), the Coastal Range (to the west), and the Intermediate Depression in the center. The climatic variety ranges from the extreme aridity of the desert in the North to the cold, rainy climates of the extreme South, with warm temperate climates in the Central part of the country. The geographic characteristics and distribution of natural resources explain the dispersion of the population throughout the national territory. Thus, in northern Chile, the population is concentrated along the coast and the interior mining enclaves, whereas it is more dispersed in the Central and South regions thanks to the natural conditions that allow for forestry, farming, and livestock development, and industrial activities. The country is administratively divided into 15 regions, each one of them being headed by an Intendant designated by the President of the Republic. In turn, each region is divided into provinces, 53 throughout the country, each having a Governor also designated by the President. Each province is divided into communes (346 in the whole country) led by a Mayor and a variable number of councilors elected by direct popular vote every 4 years [4, 5].

24.2.2 Economy

The most representative economic activities of the country rely on the exploitation of basic natural resources with copper mining, lumber and pulp, ﬁshing and agriculture generating the bulk of the national gross domestic product that amounted to $94 billion US dollars in 2004. In 2006 income per capita was $5,500 US dollars.

24.2.3 Population

According to the last National Census conducted in April 2002, Chile has 16,928,873 inhabitants, with women representing 51% of the population. Individuals under the ages of 15 represent 22.8% of the population, whereas those between the age of 15 and 64 and those over 64 represent 68.4% and 8.8% of the population, respectively. Eighty-six percent of the population resides in urban areas and only 13% in rural areas. The population density is 20.4 inhabitants per km2, varying throughout the country. The most populated regions are the region of Metropolitana that includes the capital of Chile, Santiago, followed in order of importance by the region of Bío-Bío and the region of Valparaiso. The ofﬁcial language is Spanish, but other indigenous languages are spoken, such as Mapudungun (or Mapuche), Quechua, and Rapa Nui. Of the total national population, 4.6% are recognized as belonging to an ethnic group, that is to say, 692,192 people are indigenous, with the largest concentration being found in the Araucania Region. Seventy-six percent of the country’s inhabitants profess the Catholic religion, 13.25% are Protestant, 5.8% have no religion, and 4.3% practice other religions. 24 Pediatric Palliative Care in Chile 435

24.2.4 Organization of the Health System

The Chilean health system is mixed; it involves the participation of public and private organizations. The latter function as health insurance organizations (Isapres). The public subsystem is regulated and directed by the Ministry of Health and is responsible for developing advocacy and health protection for the entire population and to meet the recovery and rehabilitation needs of its beneficiaries. This group of beneficiaries is composed of active workers, dependent or independent, including their families, who contribute to the National Health Fund (FONASA), and also of people without resources (non-contributors) [2]. All the contributors of the public system may choose to be taken care of in the establishments of the National System of Health Services. Primary health care is also free for the beneficiary population and includes actions to promote and protect health, such as health preventive measures for children, immunizations, care of pregnant woman, and other actions, such as delivery of food to at risk populations. This type of care takes place in health clinics that depend on municipalities or communal governments. The private health subsystem serves approximately 30% of the population. It is composed of 22 Isapres opened to the community. Isapres are private companies that offer health insurance to cover medical expenses of their affiliates and operational expenses [2].

24.3 Children Populations that Require Palliative Care in Chile

In Chile, according to data from the 2002 Census, individuals under 15 years of age represent 22.8% of the total population. Proportionally, the child population has been declining steadily in the country, from being one-half of the national population in 1970 to 35% in 1992, and less than one-third in the last census [4]. The infant mortality rate is 7.8 per 1,000 live births, similar to that of more developed countries, cancer being the second leading cause of death between the age of 5 and 15 years, after accidents and violence [2]. There is no national registry of children with life-limiting diseases (LLDs). Some national publications suggest that the group of pediatric patients with “chronic disease” represent 34% of hospital expenses. Since 2008, the Chilean Society of Pediatrics has a multidisciplinary committee in charge of organizing the care of children and adolescents with special health needs (NANEAS) in the different health centers, but so far it has not been possible to obtain an exact number of children requiring such special attention [6–8]. Of all the LLDs, cancer has the highest probability of cure. In Chile, it is estimated that 480–520 new cases of child cancer are diagnosed each year, and with the development of the national Children’s Cancer Program (PINDA) by the Ministry of Health of Chile, the prognosis of children with cancer has improved, achieving a survival rate of 73%. However, despite the progress made so far, 436 C.P. Torres et al. approximately 120 children die from cancer each year. One-third of these children die from complications of the disease or from complications resulting from treatment, and two-thirds die from advanced disease that has not been responsive to treatments currently in use. This group of patients has been the focus of the Pain Relief and Palliative Care (PR and PC) program in an organized manner since 2003 [2, 9, 10]. Private health organizations, which serve a smaller section of the population with greater economic resources, provide PC support for children and their families mainly in oncology units. At home nursing care is also available and must be ﬁnanced by parents or health insurance. Care systems organized and coordinated by the Ministry of Health do not exist for other LLDs that affect children, and these children count on local initiatives to provide care (e.g., NANEAS Unit in Hospital Sótero del Río, southeast of Santiago). However, in recent years there has been a growing awareness of the issue, resulting in the formation of Committees of Pediatric PC in hospitals to coordinate the care of children with non-oncological diseases. The ﬁrst committee in the country was formed in 2010 in the Children’s Hospital Roberto del Rio which has an assigned population of approximately 400,000 children who are under the age of 15, have limited economic resources, and come from the North of Santiago and the 3rd and 4th regions in the North. The mission of this Committee, involving professionals from different pediatric specialties, is to make a diagnosis for the need of specialized PC at the local level and based on this information, coordinate and organize a team to respond to these needs for patients with diseases that are neurological, genetic, respiratory, etc. [7, 8].

24.4 Health Policies in Chile in Relation to Palliative Care

24.4.1 Palliative Care Program

In 1986, the Ministry of Health created the National Commission of Cancer formed by a group of experts in the field and based on the World Health Organization (WHO) recommendations to fight cancer, thus establishing in 1987 the basis for the National Cancer Program of Chile. In turn, this national program gave rise to the following programs: National Cervical Cancer Program (1987), National Adult Antineoplastic Drugs Program (PANDA, 1988), National Child Antineoplastic Drugs Program (PINDA, 1988), National Breast Cancer Program (1995) and the National Pain Relief and Palliative Care Program for adults with advanced cancer (1995) [2]. The PR and PC Program for children with cancer officially started in 2003 and its mission is: To improve the quality of life of the child and their family and to ensure dignity in death [2]. As part of this program, PC teams are embedded in PINDA cancer centers throughout all Chile, thus maintaining a model of continuity in cancer patient care. PC teams in each center participate in the weekly meetings 24 Pediatric Palliative Care in Chile 437

Fig. 24.3 Palliative care locations of the PINDA network

Antofagasta

Aconcagua Valparaíso Metropolitana

Maule

Bio Bio

Araucanía

Región de los Ríos 438 C.P. Torres et al. in which access to palliative care for pediatric patients with advanced disease is decided and coordinated. So far 10 child PC teams have been organized in the 13 PINDA centers (Fig. 24.3) and in some centers child palliative care teams work in coordination with adult palliative care teams [2, 3, 11]. Since its inception, 484 patients have entered this program, which represents approximately 81 children per year throughout Chile. The characteristics of children in the PR and PC program are described in Table 24.1. The predominance of male patients is noticeable (63%) and patients spend 67 days in PC on average, all pathologies considered, with a range that goes from 2 to 415 days. Almost 54% of patients treated in PC are diagnosed with acute leukemia and tumors of the central nervous system. The latter spend more time in PC and require more complex care [2, 12]. Upon admission, 12% of children expressed severe pain which explains why palliative care is a continuous effort starting from the diagnosis of oncological pathology. As a result, 64% of pediatric patients declared having no or light pain before death. Also, since the beginning of the PR and PC program, the percentage of patients who die in their homes has been rising, reaching 75% in 2006, and sta- bilizing around 50–55% since then (Fig. 24.4). In the last few years, care of deaths at home has become more difﬁcult because of the complexity and multiplicity of symptoms present in some children (e.g., patients with tumors of the central nervous

Table 24.1 Characteristics of patients served in oncology 2003–2009 PC (PINDA data) Number of patients 484 Median age 9 years Males 303 (63%) Average number of days in PC 67

Hospital Home 100 25 80 42 53 54 50 56

40 75 58 % Patients 47 46 50 44 20

0 2004 2005 2006 2007 2008 2009 Year

Fig. 24.4 Place of death of children in PC with advanced cancer (PINDA data) 24 Pediatric Palliative Care in Chile 439 system, patients with oncological disease relapse subsequent to the transplant of hematopoietic progenitors, etc.) and also, in other cases, because of extreme rurality or poverty [2, 12]. This model of care is based on continuity of care for the children and their families from the point of diagnosis until death. The model of care in the PR and PC program has the following important strengths:

(1) Inclusion in a public health program: a. Allows work in an established network coordinated at central and local levels. b. Under the responsibility of multidisciplinary teams composed of specialists. c. Ensures the supply of drugs to a vulnerable population with scarce resources. (2) Model of continuity of care for the patient and their family: a. No transfers to another team. b. More effective communication between the family and the treatment team. c. Flexibility and personalized care.

However, there are several weaknesses of the PR and PC program, including:

(1) Geographical difficulties: create challenges to establish a more efficient care network. (2) Fear in non-oncology centers of caring for pediatric patients in PR and PC program: this implies that specialized PC teams in the primary oncology centers must maintain permanent and fluid communication with the centers where the child will be taken care of if the family decides to return to their region of origin where no specialized pediatric oncology center is available. This situation raises the urgent need to educate primary care teams to palliative care, and include palliative care in undergraduate health careers and in pediatric specialization. The handling of the children’s symptoms and the complications derived from the treatments is detailed in a Protocol of Care which was first edited in 2005 (Fig. 24.5), and is available in all the centers. This protocol is based on the 1998 WHO protocol and is updated according to current scientific evidence [11, 13].

24.4.2 Reforms to Develop Palliative Care

For the Chilean Ministry of Health, cancer is a public health concern, and given the aging population, the probability of developing cancer will double in the next decade. Although child cancer cure rates are high, one-third of these patients will die from disease progression or complications resulting from it. Considering this background, it was decided in 2003 to incorporate PR and PC for advanced cancer to the health reform. This reform includes, in addition to other modiﬁcations, the addition of PC to the regulations of “Explicit Health Guarantees”, which means 440 C.P. Torres et al.

Fig. 24.5 Pain relief and palliative care protocol for children with cancer – 2005

that health centers are mandated by law to guarantee access, opportunity, financial coverage, and quality of care for patients in the public health system [2]. The guarantee of “access” implies that all patients with cancer who require PR and PC care must receive it without exclusion. Regarding the guarantee of “opportunity”, patients must receive PR and PC in no more than 5 days from the moment the diagnosis of advanced cancer is made and it is determined that there is no possibility for a cure. As for the guarantee of “financial coverage”, the Ministry of Health guarantees the financing of a “basic basket” of drugs and procedures included in the PR and PC protocol. Finally, the guarantee of “quality of care” means that health care protocols are evaluated and updated annually in accordance to recommendations made by groups of experts and evidence available nationally and internationally. 24 Pediatric Palliative Care in Chile 441

In order to evaluate the PR and PC program, Health Objectives have been established which can generate indicators of the quality of care provided to the public by health centers. These health objectives are established every 10 years. For the period of 2000–2010, the following six health objectives were set: [14]

(1) To reduce the prevalence of pain (improving the quality of life): the indicator utilized is the variation of the EVA scale used for assessment of patient’s pain (or equivalent depending on the child’s age) during admission to and discharge from the program. (2) To increase the proportion of patients who die at home with the support of palliative care (improving the quality of death). (3) To increase the adherence to the PR and PC Program currently, 100% of children with cancer who require PR and PC are receiving care. No patients are dropped from palliative care. (4) To increase human resources trained to care for people enrolled in the National Program of Palliative Care: to fulﬁll this goal, the Ministry has developed a series of strategies and agreements for continuing education. (5) To improve early access to the National Program of Palliative Care: the guarantee of fast access (less than 24 h) is maintained for all patients. (6) To increase the therapeutic use of morphine.

24.4.3 Team in Charge of Providing Palliative Care

In accordance with the PR and PC protocol for children with cancer, each hospital in the PINDA network has a “Pediatric Palliative Care Team” composed of at least a doctor, a nurse, and a pharmacist, all qualified in palliative care [2, 10, 11]. However, it is established that each center should include other professionals and volunteer workers to fulfill the objectives of the program. Thus some pediatric palliative care teams include psychologists, occupational therapists, social workers, volunteers and spiritual companions. However, many of these volunteers do not have specific training in palliative care [2, 10, 11]. The pediatric palliative care team completes administrative tasks and gives direct assistance to the children and their families, as described below: Administrative management:

• Make sure that all essential analgesics and supplies are inventoried in the local pharmacy. • Keep a systematic, continuous, valid, and reliable record of the patients admitted to the PR and PC program. • Coordinate care with the hospital centers and clinics in the patient’s place of origin for those children whose homes are located far away from the centers where they were diagnosed and treated. • Train health teams in emergency, secondary, and primary care services; urban and rural clinics; and other teams in the health care network. 442 C.P. Torres et al.

Direct assistance to the children and their families:

• Assess, record, and treat the child’s pain and symptoms throughout the care process. • Educate the patient and his family towards self-care and preservation of autonomy. • Extend palliative care in children’s homes, taking into account family and environmental conditions in each case. • Support and accompany the child and their family during the ﬁnal phase of the disease and during the families’ grieving process.

24.4.4 Beneﬁts of Palliative Care

The work of the PC teams is coordinated and organized in weekly meetings in which patients being treated and their prognosis are evaluated in conjunction with the oncology team. If no possibility of curative treatment exists, either parents or the legal guardian are informed of the child’s condition and the patient is administratively admitted in the PR and PC program. The doctor and the nurse perform the first evaluation of signs and symptoms, and the first information session, thus helping and guiding parents through the decision making process [2, 10, 11]. Children admitted in the PR and PC program are under the age of 15 years, but children treated by PINDA who are above that age also have access to the program if they are in a follow-up phase or if they are being treated in accordance to official protocols of relapse and present advanced oncologic disease. Care can take place in different settings: outpatient, hospital, via telephone monitoring, and/or at home. The decision regarding the type of care to select is determined by a series of factors, such as: performance status (PS) of the child, wishes of the child and family, the possibility of the family giving up, the proximity of the home to the hospital, the intensity and frequency of signs and symptoms and the resources available to treat them. The PC team counsels, but the decision of where care will take place belongs to the child and family. Figure 24.6 shows the different levels of complexity in PC according to the administrative organization of health services. Unlike the countries of the northern hemisphere, our country does not have hospice-like facilities for children in palliative care. The different PC options are further detailed below, with emphasis on the flexibility to select one or the other:

Outpatient: Controlled outpatient is established for those patients who live near the hospital and have a PS 0 (normal activity) or PS 1, that is, show symptoms of the disease, but are able to carry out activities of daily living. Hospitalization: The child may remain hospitalized in the oncology unit while the primary caregiver is trained in home-based care. Also, when the symptoms of the disease worsen and caregivers are unable to keep the child at 24 Pediatric Palliative Care in Chile 443

DIAGRAM OF PEDIATRIC PC

PAIN RELIEF AND PEDIATRIC ONCOLOGY PALLIATIVE CARE UNIT THIRD LEVEL TEAM (PINDA CENTERS) (ONCOLOGY UNIT)

Complex Patients COMMITTEE OF PALLIATIVE CARE Management of PC Unit- Management Center of PINDA Center Origine HOSPITAL

Home Hospital Home Regional Hospital

Complex Patients

Fig. 24.6 Organization of PC for children with advanced cancer according to levels of complexity

home or if there is any psycho-social situation causing wear down and fatigue of their caregivers, the decision to admit the child to hospital can be made in conjunction with the PC team. Within the hospital, the child remains in an individual room accompanied by loved ones. Hospital routine is made ﬂex- ible to deliver close and respectful attention to the needs of the family. As such, visits outside the habitual schedules, special foods, games or activities of interest for the patient are allowed. Telephone monitoring: The child can remain at home and be monitored via telephone by a doctor and/or a nurse in an open and ﬂuid way, 24 h a day, 7 days a week. For this reason, the parents or the primary caretaker count on the telephone contact of their doctor and nurse, as well as of the oncology hospital 444 C.P. Torres et al.

in charge. This telephone contact is very useful since it allows modifying or reinforcing instructions and gives much peace of mind to parents who feel supported in the care of their child without having to go to the hospital. At home: Depending on the decision of the child and his family, care can be developed entirely at home, under monitoring by the doctor and/or nurse via telephone and home visits. Home visits are scheduled with families according to their needs and the children’s symptomatology, as well as to evaluate family dynamics, signs of giving up, or to empower caregivers by insisting on the good they have done while caring for their son/daughter. It is very important to take advantage of this instance to assess the siblings, grandparents and other members of the family who rarely go to the hospital. In some cases, children were kept at home with the support of noninvasive ventilation or at home oxygen if required, while also receiving kinesiology/respiratory care. Grieving support for parents: To date, two support groups for parents who have lost a child to cancer have been created (“Living again” and “Learning to live again”). Both groups operate in Santiago, and have been evaluated positively by participants.

24.5 Training, Extension, and Investigation

For the development of the PR and PC program, meetings are held monthly involving a group of experts in the ﬁeld who provide advice to the director of the program in the ministry. In addition, every year, during the ﬁrst week of October, a “Day of Evaluation” of the PR and PC program is held. During this event, the annual technical report analyzing the number of cases handled, their demographic characteristics, relevant symptoms, and the level of completion of the health objectives is released. Adults and children representing all PC teams in the country participate in the conference, as well as national and foreign guests who discuss other topics of interest to palliative care [12]. During this conference, two contests are held:

• Stories and poetries aimed at the health team and caregivers of people requiring palliative care. • Paintings for children in palliative care from around the country. In this contest, children can express through their drawings how they imagine “a world without pain”.

In relation to education, members of the PC teams give frequent classes to undergraduate students in nursing schools, both in public and private universities, even if such a palliative care teaching topic does not officially exist. At the postgraduate level, during the training of Specialists in Hematology and Pediatric Oncology at the Faculty of Medicine of the University of Chile, students participate in palliative 24 Pediatric Palliative Care in Chile 445 care activities created by the PC team, both in hospital settings and at home. In addition, the Pontifical Catholic University of Chile offers a specialization in pediatric oncology for nurses which includes an in-depth course in palliative care. Considering the lack of university programs to train specialists in palliative medicine, the Ministry of Health established a strategic alliance with Spain to train staff via a distance learning degree called “Advanced Course in Palliative Care”. This program is supported by the Ministry and the Spanish Health Cabinet (GAFOS). Subsequently, another strategic partnership with the Postgraduate School of the Faculty of Medicine of the Universidad Mayor (private university) was established. In 2006, the training of specialists in palliative medicine was initiated as a test for a period of 14 months, totaling 2,082 academic hours. This program has now been discontinued, but there is interest in reinitiating it at the University of Chile (state university). Despite the intent of the Ministry of Health to increase the number of palliative care experts, this initiative is still insufficient given the increasing demand for palliative care in the different services of the public health network. A degree in Palliative Care Oncology offered through the Digital Learning Network (MEDICHI) of the Faculty of Medicine of the University of Chile focuses on adults’ care training, but in the near future concepts of pediatric PC will be included [15]. Professionals who work in PC for adults and children actively participate in scientific activities (nationally and internationally) such as those organized by the Latin-American Association of Palliative Care (ALCP) which, in 2010, established the Commission of Pediatric PC which is in charge, among other missions, of establishing the standards of care for children in PC in countries of Latin America [16]. Regarding research in pediatric PC, we can say that at the moment this is not considered a priority. There is no support from the Ministry of Health or funds available at the local level to develop research. There are few publications or participation in collaborative research protocols. Some teams are developing descriptive research, but efforts are made to consolidate projects with wide topics through initiatives such as the ALCP.

24.6 Conclusion

Until now pediatric PC has been limited to the group of children with advanced cancer, beyond the reach of curative therapies. The Ministry of Health has created a platform that has ensured a protocol and a national network of care, which has beneﬁted many children in low income families since 2003. From this model, our challenge now is to extend this care to pediatric patients with non-oncological diseases. The implementation of these units is currently at the local level (two hospitals in Santiago), which depend on the interest and enthusiasm of pediatricians and/or nurses dedicated to PC or pediatric specialists who work in centers where these patients are concentrated. 446 C.P. Torres et al.

References

1. Department of Statistics and Health Information (2009) Ministry of Health of Chile 2. PC and PR Programs (2008) Ministry of Health of Chile. www.minsal.cl. Accessed 2011 3. Subsecretary of Public Health: Non-transmissable Chronic Diseases Division (2010) Child Cancer Program. Ministry of Health, Chile 4. National Institute of Statistics of Chile (2002) 2002 census. National Institute of Statistics of Chile. www.ine.cl. Accessed 2011 5. Government of Chile (2011) General information on Chilean administrative structure. Ministry of Economics, Public Works, and Tourism. www.sernatur.cl. Accessed 2011 6. Vargas N, Arredondo O, Ilabaca G et al (1994) Enfermedades crónicas en pacientes pediátricos hospitalizados: frecuencia y tipo de enfermedad. Rev Chil Pediatr 65(5):264–267 7. Chilean Society of Pediatrics (2008) Recomendaciones para el cuidado de niños y adolescentes con necesidades especiales en salud (NANEAS). NANEAS Committee. http:// comitenaneas.sochipe.cl. Accessed 2011 8. Vargas N (2009) Conceptos y bases del cuidado de niños y adolescentes con necesidades especiales en salud (NANEAS). Chilean society of Pediatrics. Pediatría para “NANEAS” pp 19–32 9. Campbell M (2005) Desarrollo de la oncología pediátrica en Chile. Rev Ped Elec (en línea) 2(2):1–4 10. Rodriguez N, Cadiz V, Farias C, Palm CH (2005) Cuidado paliativo en oncología pediátrica. Rev Ped Elect (en línea) 2(2):33 11. Rodriguez N, Fields C, Fields M et al (2005) Protocolo alivio de dolor y cuidados paliativos para el niño con cáncer. Ministry of Health of Chile, pp 9–17 12. National Pain Relief and Pallitaive Care Program (2009) Technical report. Ministry of Health of Chile, pp 1–6 13. World Health Organization (1998) Cancer pain relief and palliative care in children. World Health Organization 14. Department of Epidemiology (2002) Los objetivos sanitarios para la década 2000–2010. El Vigia 5(15):5–11 15. University of Chile (2011) Digital Learning Network (MEDICHI). University of Chile. www. medichi.cl. Accessed 2011 16. Latin American Association of Palliative Care (2011) Mission and objectives. Latin American Association of Palliative Care. www.cuidadospaliativos.org. Accessed 2011 Part VIII Conclusion Chapter 25 Pediatric Palliative Care: A New and Emerging Paradigm

Susan Fowler-Kerry

Abstract As demonstrated in the chapters of this book, countries are as diverse as they are similar in regard to pediatric palliative care. Central to every barrier, enabler, program, policy, and organization is a child with a life-limiting illness and a family struggling to survive and accept that they may lose that child. What rights do these children and families have? Is pediatric palliative care a right or a need? These questions continue to be posed by many around the world who ﬁght for these children every day in their roles as researchers, clinicians, advocates, and policymakers. As the global community comes together to initiate change the lessons learned in sources such as this book will be invaluable.

Keywords Pediatric · Palliative care · Hospice · International · Comparisons · Barriers · Enablers · Provision · Development · Strategies · End of life · Paradigm · Human rights

Over 300 years ago the famous British Poet Laureate John Dryden wrote, ‘Every man who lives is born to die’ [1]. This recognition is tragic enough, but the reality is sadder still. As humans, we attempt to pack in as much as we can between birth and death, and quite often succeed. However, for some children and youth this window of opportunity to live, packing in as much as possible, becomes compromised due to a life-limiting/life-threatening diagnosis. Pediatric palliative care becomes the only means for these children and their families to achieve as many worthwhile ‘things’ in their respective windows of life. Frank Brennan [2] points out so eloquently that the provision of palliative care services for children and their families remains a neglected area globally. A situation juxtaposed alongside the rhetoric heard from all corners of the globe from politicians, health care professionals, advocates etc. suggesting ‘children are everyone’s future, our most precious assets’ and a UN Convention on the Rights of the Child [3] which identiﬁes that humanity owes to the child the best it has to give and represents the highest norms of civilized behavior. Therefore, it is against this backdrop, that the current patchwork of global, national and local pediatric palliative care services exists. Where at this moment in time there are countless children and their families

S. Fowler-Kerry (B) College of Nursing, University of Saskatchewan, Saskatoon, SK, Canada S7N 0W3 e-mail: [email protected]

C. Knapp et al. (eds.), Pediatric Palliative Care: Global Perspectives, 449 DOI 10.1007/978-94-007-2570-6_25, C Springer Science+Business Media B.V. 2012 450 S. Fowler-Kerry encountering numerous barriers to pediatric palliative care, including demographics, geography, limited resources, and a lack of awareness by health care professionals, politicians and the public. Unnecessary suffering (emotional, physical & spiritual) that characterizes every country, every society and is present even in the richest countries where geographical location alone may not ensure comprehensive pediatric palliative care services. Each contributing author has utilized a critical social lens to provide a comprehensive overview of the current state of pediatric palliative care in their nation states arriving at a consensus that there exists no ‘right way’ to provide pediatric palliative care. Rather, each program or model of care described has been contextually suited to meet the resources and cultural expectations within its own locale. There is however, a universal need for recognition of requisite education, skills and experience necessary for the care of children and their families to provide palliative care services. In each chapter, we are reminded about how interlinked we are as global citizens and how basic human needs are the same everywhere. Unfortunately, there is no impartial arbitrator to determine how privilege and oppression, fortune and mis- fortune are distributed within and across different sectors of the population, nor is there any fairness about which families will have a child with a life-limiting or life- threatening diagnosis. However, the question we must all grapple with is whether the state should intervene and/or become involved in trying to leverage a more even playing field. That is not to say that the state would ever be in a position to change the reality of a child’s diagnosis, but should all the devastating consequences from such a diagnosis be a foregone conclusion? The harms associated with such a diagnosis could certainly be lessened through social policies that direct the provision of and access to pediatric palliative care services to all who require it. As global citizens we need to be cognizant that everyone is variously dependent and, that at any given moment, anyone of us may become life-limited, disadvantaged, or disabled. Becoming so should never place an individual or family in a position of having no choice and no alternative and of being forced to become reliant on unrespon- sive services or demeaning charity that renders one marginalized, dependent and voiceless. While an infusion of capital will certainly allay some of the challenges in the provision of services globally, it certainly will not ‘fix’ all. Each author has provided novel and unique strategies to enhance and expand current services highlighting the need for health care professionals and other community services to work collaboratively to support children and their families in their homes and communities, to support parents to care for their child, to build stronger community capacity, and to use existing resources more efficiently and effectively. It has often been said that necessity is the mother of invention; so are we ready, individually and collectively, to challenge and replace the current paradigm so that children with palliative care needs become our moral touchstone, and, like all others, must not be denied a fair chance at a standard of living that includes good education, protected environments, economic opportunity, and health care that includes pediatric palliative care services? This combination of an opportunity and a problem requires what Kuhn, a 25 Pediatric Palliative Care: A New and Emerging Paradigm 451 noted historian of science [3] would describe as a revolutionary response, or a glit- tering opportunity of unrivaled promise. Collectively we are challenged globally to translate children’s ‘paper rights’ into ‘lived rights’, in this struggle we have seen how a determined individual or small group have made the cognitive lane change and despite obstacles that would have and have deterred many went on to actualize the words of Paulo Friere [4] that ‘hope...does not consist of crossing one’s arms and waiting’. Thank you for showing us all it can be done.

References

1. Dryden J (1668) Prose 1668–1691: an essay of Dramatick Poesie and shorter works, Volume XVII. University of California Press 2. Brennan F (2010) Pediatric palliative care as a basic human right. In: Pfund R, Fowler-Kerry S (eds) Perspectives on palliative care for children and young people: a global discourse. Radcliff Publishing Ltd. Oxford 3. Kuhn T (1962) The structure of the scientiﬁc revolutions. University of Chicago Press, Chicago 4. Friere P (1970) Pedigogy of the oppressed. Seabury Press, New York Index

A Canadian Network of Palliative Care for Adolescent, 21, 53, 58, 88, 96, 113, 123, 144, Children (CNPCC), 11, 316–318 148, 153, 189, 225–226, 228, 231–234, Canadian Network of Pediatric Hospices 243, 263, 284, 301, 314, 318, 325, 327, (CNPH), 317–318 329, 334, 350, 371, 373–374, 411 Cancer, 3, 6–9, 11, 19–21, 26, 28, 35, 49–51, Advance care planning, 295 59, 70–71, 77, 85–87, 96, 101–106, Africa, 5–6, 17–25, 27–38, 41–61, 65–77 110, 114, 117, 120, 125, 127–128, After-care for children, 231 131–132, 134, 138–141, 144, 146, Anti-retroviral therapy, 29 148–150, 153–154, 163, 171–173, Argentina, 12, 82, 349, 352, 405–416, 433 178–182, 188, 190–193, 197–200, 231, Armenia, 7, 81–90, 129, 140 233, 242, 252, 254, 256–257, 260, Assistance, 21, 24, 74, 101, 105, 125, 178, 262, 275, 277, 288, 294, 324, 327, 212–213, 255, 287, 350, 352, 360, 369, 340–342, 348, 350–351, 354, 365, 383, 373, 396, 408–409, 411, 414–415, 422, 389, 394–395, 398, 406, 408–409, 411, 441–442 414–415, 432, 435–436, 438–440, 445 Australia, 12, 127, 178, 379–400 Canuck Place Children’s Hospice, 306, 308, 315, 318 Case studies, 246–249, 288, 414 B Child, 4, 9, 20–22, 29–30, 33–38, 50, 52–53, Barriers, 5, 8–9, 11, 53, 59, 85, 101–102, 115, 57–59, 68, 73, 77, 83–84, 87–89, 97, 128, 134, 140, 143, 145–151, 172, 180, 105, 113–114, 116, 120–121, 124–125, 190, 192–196, 203–205, 278, 288–289, 140–154, 162, 166, 174, 177–180, 327–328, 334, 349, 352, 360, 362, 390, 189–192, 194–195, 198–201, 203–205, 399, 408, 450 211, 213–216, 221, 225–226, 228, Bereavement, 6, 9, 29, 33, 37–38, 55, 58, 70, 243–244, 245–247, 249, 257–259, 72–76, 105, 114–115, 121, 123, 142, 262–264, 267, 272, 275–276, 279–281, 147, 149, 153, 170, 174, 178, 192, 194, 284, 286–287, 291, 304, 307–311, 315, 196, 198, 200, 241–243, 245–246, 249, 330, 339, 350, 354–356, 360–361, 255, 259, 266, 280, 284, 287, 307, 364–374, 380–381, 385–386, 388, 390, 309–311, 314–315, 332, 361, 363–364, 392, 394, 396–398, 400, 408–409, 412, 369–370, 372–374, 385, 394–397, 415 414, 420–428, 432 Bioethics, 390–391, 418, 427 Child health services, 93, 166, 258 Brazil, 13, 405, 410, 417–428 Childhood cancer, 19, 21, 28, 96, 103, 105–106, 171, 352 C Children with life limiting illnesses, 6, 9, 11, Canada, 10, 82, 127, 261, 301–319, 324, 343, 33–34, 55, 72, 102, 106, 143, 163, 177, 359 188, 213, 246, 326–327, 363 Canadian Hospice Palliative Care Association Children’s Project on Palliative/Hospice (CHPCA), 128, 305, 310, 316, 318 Services (ChiPPS), 360, 363

C. Knapp et al. (eds.), Pediatric Palliative Care: Global Perspectives, 453 DOI 10.1007/978-94-007-2570-6, C Springer Science+Business Media B.V. 2012 454 Index

Chile, 13, 410, 431–445 313–315, 318, 361, 366–367, 375, 396, CIS region, 81–90 398 Community service, 123, 177, 373 Epidemiology, 96, 242, 350, 363–364, 368 Comparisons, 393 Experience, 4, 6, 21, 33, 37–38, 54, 58, Costa Rica, 11, 323–344, 349, 352 105–106, 115–116, 123, 134–135, 143, Country in transition, 100 152–153, 162, 164, 173, 203, 205, 216, Culture, 4, 8, 82, 90, 92, 140, 142, 148–149, 229, 230, 247–248, 259–260, 262–263, 152, 162, 165, 190, 197, 200, 204, 270, 288–289, 354, 372, 383–387, 390, 394, 293, 354 400, 410, 412, 415, 422, 425, 427, 450

D F Day Center, 328, 330–335, 338 Families, 3–5, 8, 11, 19, 21–22, 33, 36, 52, Death, 3, 11, 25, 29, 49, 52, 67–68, 76–77, 54–56, 70, 73, 75–77, 82, 84, 86–90, 95, 100, 102, 104, 106, 111–112, 114, 97, 100, 115–116, 121, 125, 128, 116, 123, 130, 140–142, 146, 148–149, 133–135, 139–148, 151, 153, 162, 166, 152–153, 162, 172, 174, 181–183, 170–172, 177–178, 180, 182, 190, 196, 188–190, 193–194, 197, 199–200, 204, 199, 200, 203–204, 209–211, 213, 209, 214–216, 220–221, 226, 247–248, 215–216, 220–222, 224–231, 245–249, 252, 257–259, 261, 263, 274–275, 279, 254, 257–259, 265, 270–271, 276–290, 295, 303–305, 309, 327, 332, 341, 302, 304, 307–311, 314–318, 332–333, 347–348, 354–355, 364, 371, 373–375, 338–339, 341, 343, 347, 349, 360–363, 380–381, 418, 427, 432, 435–439, 441, 365–367, 371–372, 375, 382–385, 388, 449 390, 394–397, 400, 407–410, 419–420, Developing economy, 93 423, 435–436, 442, 449–450 Development, 5–6, 9, 11, 23, 28–29, 31–33, Family situation, 215 36–37, 45, 47–48, 54–56, 70, 72, Financing of children’s hospices, 218–220 83–86, 100–101, 132, 144, 146, 149, Foundation for the Palliative Care Unit, 329, 154, 163–164, 166, 187, 192, 195, 197, 333, 339, 343 223, 225, 231, 239–246, 249, 252–262, Future, 5, 9, 70, 77, 124, 180–181, 194, 209, 265–266, 272, 276–279, 284–285, 241, 246, 249, 264–267, 279, 286, 290, 288–289, 291–293, 305, 307–308, 312, 311, 313, 333, 381, 390, 392, 399–400, 316–318, 324, 340, 342, 351, 362, 370, 445, 449 382–385, 388, 395, 408, 410, 416, 418–419, 425 G Development pediatric palliative care, 256–262 German health care system, 211 District hospital, 18, 23–24, 30, 36, 45, 69, Germany, 9, 209–236, 253 197, 205 H E Health care, 10, 13, 32–38, 44–47, 52–54, Education, 5, 9, 11–12, 31–32, 37–38, 54, 56, 61, 69, 70, 73, 77, 81, 83–84, 86, 69, 77, 82–83, 85, 87–88, 104–105, 92–94, 99–100, 102, 113, 115, 125, 134–136, 140, 143, 145, 147–154, 178, 128, 135–136, 139–140, 145, 150, 180, 183, 190–191, 193–194, 196–197, 188–189, 209–214, 218, 222, 229, 255, 202, 204, 226–228, 230, 241–245, 256, 258, 265, 272, 287, 293–294, 302–304, 276, 278, 281, 284–286, 291, 293, 302, 307, 315, 327, 332, 342–343, 346–347, 307–312, 316, 343, 352–353, 361–362, 354–356, 362, 371, 380, 383, 387, 391, 384, 389–390, 396, 398, 400, 418, 441, 393–394, 397, 408–409, 413–415, 435, 444, 450 439–440, 449 Enablers, 23, 30, 36, 48, 61, 66, 100–101, 152, Healthcare, 4–13, 18–20, 23–24, 83–84, 86, 171, 225, 227–229, 279, 307, 380 88–89, 110, 113, 115, 117, 125, 127, End of life care, 4, 53, 55, 58, 115, 119, 124, 142, 144, 151, 153, 162, 165–166, 170, 128, 139, 149, 154, 193–194, 197, 247, 176, 180–181, 187–188, 194, 196–197, 280, 292, 295, 302, 305, 307–309, 311, 202, 204–205, 235, 240, 242–245, Index 455

270–272, 283, 292, 315, 346, 349, 179, 182, 188, 213, 241–246, 264, 267, 359–364, 366, 371, 374, 399–400 272–275, 277–279, 281, 286, 288, 304, Health Professional Education, 144 310–311, 326–329, 349–350, 363–365, History, 21, 29–33, 82, 100–101, 252, 261, 372, 374, 381, 384–387, 393, 396–397, 339–340, 346, 359–360, 397, 410, 407–408, 410–412, 435, 449–450 412 Life-limiting illnesses, 6, 8–9, 11, 18–20, HIV/AIDS, 3–6, 18–20, 29–31, 34–35, 43, 47, 33–34, 55, 86, 95, 143, 163, 177, 182, 49–53, 56, 58, 60, 68–70, 75–77, 84, 188, 213, 242, 246, 326–327, 363, 88, 96, 98, 100, 174, 178, 190, 274 374 Holistic care, 55, 76, 100, 262 Life threatening illness, 66, 75–76, 84, 90, 100, Home based care, 19, 23–24, 30, 33, 36–37, 214, 244, 247, 304, 308, 311, 317, 364, 52, 58–59, 66, 69–70, 77, 83, 144, 149, 374, 396 397, 442 Hospice M Africa Uganda, 19, 22, 32, 48, 51–56, 59 Malawi, 5–6, 17–25, 32 care, 28, 132–133, 170–171, 177, 220, Malaysia, 7, 109–125, 186 229, 249, 254–255, 262, 281, 305, 308, Medicaid waiver, 360, 362–363, 365–366, 315, 317–318, 360, 363–365, 368–369, 371–374 373–374, 387 Medical Education, 193 Hospitals, 8–9, 11–12, 18–19, 23–24, 29, 31, Medication, 11, 22, 25, 33, 36, 47–48, 52–53, 37, 45, 48, 51, 66, 69, 72, 93, 100, 61, 71, 73, 76, 85, 89, 99, 101, 104, 102, 105, 111, 113–114, 116, 163, 171, 124, 146, 150–152, 155, 178–179, 187–188, 192–199, 202–203, 211–212, 199–200, 248, 256, 295, 339, 352–354, 215–216, 243–244, 255, 272, 277, 279, 356, 360, 370, 380, 411 281, 284, 288, 293, 303, 307, 309, 311, Mexico, 11, 345–357 330, 347, 350, 362, 364, 367–368, 371, Middle East, 8, 127–155, 261, 390 375, 390, 394, 409–411, 428, 436, 445 Mildmay, 6, 32, 48, 51, 54–61, 72 Human rights, 55 Model, 7, 10, 12, 19–20, 23–24, 27, 31, 35–37, 47, 51–52, 72, 74, 88, 100, 114, 116, I 128, 141–143, 154, 165, 193, 242, India, 7, 91–106 244–245, 247, 249, 254, 262–265, 275, Indigenous populations, 354, 379–380 279, 285, 288, 293, 312, 316, 341–343, In-patient children’s hospices, 215–221, 351, 362–363, 367, 382–384, 387, 396, 225–226, 229 408, 420, 436, 439 Integrated care, 36, 180, 196, 246, 249, A Model to Guide Hospice Palliative Care: 273 Based on the National Principles International, 4–6, 12, 19, 23, 31–33, 50, and Norms of Practice, 312, 316, 55, 65, 70, 72–73, 83–85, 90, 100, 318 104–105, 128, 134, 141, 166, 181, 210, Morbidity pattern, 95 241–243, 254–255, 258, 260, 273, 277, 285, 289, 313–318, 321, 333, 349, 352, N 360, 362–363, 389, 393–394, 408 National Hospice and Palliative Care Ireland, 9, 239–249, 269–272, 274, 292 Organization (NHPCO), 12, 255, 360–361, 363, 368, 374 K National Pediatric Palliative Care Policy KKH Paediatric Palliative Care Programme, development, 240–242 177 National program, 117, 166, 436, 441 L Needs Assessment for PPC, 242–243 Levels of care, 45, 65, 69, 144, 213, 281, Neurodegenerative, 89, 173, 257, 275, 294, 368–369, 388 379, 381, 388 Life-limiting, 6, 8–9, 11, 18–20, 31, 33–34, 38, New Zealand, 12, 379–400 55, 74, 86, 95, 143, 162–163, 169, 177, Nursing Competencies, 285, 312 456 Index

O 209–236, 239–249, 251–295, 269–295, Oncology, 6, 13, 20, 71, 74, 83–84, 86–87, 301–319, 323–357, 359–375, 379–400, 104, 110, 138–139, 141, 145–146, 405–428, 431–445, 449–451 148, 150–152, 154, 163–164, 171–173, Pediatric Palliative Care and Pain Control 178–180, 195–196, 198, 255, 257, 261, Clinic, 11, 325 266, 279, 283, 287, 293–294, 309, Pediatric palliative care programs, 5–6, 8, 12, 349–352, 390, 411, 414, 418, 436, 22, 29, 102–105, 164, 166, 171, 174, 438–439, 442–445 177, 180, 182, 188, 191–193, 195–197, Opioid, 34, 81, 85, 101–102, 145, 148, 256–265, 306–309, 328, 342, 383–388 151–152, 166, 195, 204, 256, 353, Pediatrics, 3–13, 17–25, 27–38, 41–62, 65–77, 408–409, 411–414, 425 81–106, 109–125, 127–155, 161–166, Organization, 5–7, 10–12, 18, 22, 24, 29, 169–183, 185–205, 209–236, 239–249, 31–38, 45, 48, 51–52, 56, 58–61, 251–295, 301–319, 323–357, 359–375, 69–72, 75–77, 84–85, 87–89, 93–94, 379–400, 405–428, 431–445, 449–451 98, 100, 105–106, 113, 116–117, 128, Pioneering Paediatric Palliative Care, 85 143, 153–154, 170–171, 178–179, 182, 187–188, 203, 211–212, 215, 230, 239, Poland, 10, 89, 251–267 242, 245, 248, 253–256, 258–259, Policy, 9, 11, 24, 28, 35 264–265, 270, 275–277, 281, 288, 290, Program development, 328, 342–343 315–316, 328, 333, 341, 343, 352–353, Provision, 4, 6, 10, 12, 19, 21–24, 31, 33–36, 360–361, 363, 372–374, 380, 383, 385, 38, 51–55, 59, 70–77, 85–86, 100–101, 394–396, 406, 408–409, 412, 415–416, 103, 113–114, 117, 120, 142, 149–150, 418–420, 435–436, 442–443 154, 170, 179–180, 188, 194–197, 216, Out-patient children’s hospices, 215, 223–229, 218, 220, 225, 235, 242–243, 248, 235–236 265–266, 271, 276–277, 280–281, 283, 286–290, 307, 312, 315–316, 353, P 359, 363, 373–374, 384–385, 387–391, Pain, 9, 11, 13, 20–21, 23, 25, 29, 33–34, 394–395, 399, 419–420, 449–450 48, 53, 55, 58–59, 61–62, 73, 84–85, Provision of care, 51–53, 81, 86, 281, 388, 391 88–90, 97, 100, 102, 104–105, 115, Psychological stress levels and strains, 118, 120, 123–125, 128, 142–143, 229–231 145–146, 148–153, 178–179, 190–191, 193–195, 197–200, 204, 218, 223, 235, 245, 248, 255–257, 260–261, 264, 266, Q 285, 294–295, 308–309, 311, 314–315, Quality, 12–13, 19–20, 24, 33–36, 38, 45, 324–325, 333, 339–341, 349–354, 53, 55, 59, 66–67, 70–71, 75–77, 84, 368–370, 372, 374, 382, 386, 389, 89–90, 93, 99–100, 102–103, 106, 408–409, 411–412, 414, 419, 425, 427, 117–119, 123, 141, 143–144, 155, 171, 432, 436, 438, 440–442, 444 176–177, 181–182, 192, 203–204, 225, Palliative Care Association of Uganda (PCAU), 236, 246–247, 252, 259, 261, 275, 277, 48, 51, 61 284, 287–291, 293, 305, 311, 329, 333, Paradigm, 139, 449–451 341, 343, 362, 370, 372, 380, 383, Pediatric end-of-life care, 193–194, 197 389–390, 392, 394, 409, 415–416, Pediatric Hospice Palliative Care Guiding 418–420, 424–425, 436, 440–441 Principles and Norms of Practice, 317 R Pediatric intensive care, 13, 192, 200, 350, Research, 9–12, 23–24, 32–33, 37, 48, 50, 352, 354–355, 411, 418 56, 76, 86, 104, 124, 127, 149, 172, Pediatric pain management, 191, 195, 180–181, 191, 193, 197, 229–234, 255, 198 259, 261, 276, 285, 289–290, 302, Pediatric palliative care, 3–13, 17–25, 27–38, 307–309, 311–318, 325, 352, 360–362, 41–62, 65–77, 81–106, 109–125, 365, 370–371, 388, 392, 399, 409, 416, 127–155, 161–166, 169–183, 185–205, 428, 445 Index 457

Research Team: Transitions in Pediatric T Palliative and End of Life Care Team for Research with Adolescents and (PedPalNET), 301 Children in Palliation and Grief Resources, 4, 11, 34–35, 37–38, 45, 51, 54, 56, (TRAC-PG), 314–315 59, 65–66, 71–74, 76–77, 81, 85–89, Terminal, 4, 89, 102, 116, 127, 139, 141–142, 97, 99, 120, 143, 166, 191, 194–195, 144–145, 170–171, 178, 191, 199, 204, 199, 221, 225, 229, 234, 242–244, 265, 209, 211–215, 244, 256, 258–259, 287, 289, 293, 327, 333, 335–337, 262–264, 327, 340–342, 345, 365, 339, 342–343, 345, 360, 362, 366, 384–385, 406, 408, 411, 415, 418, 421, 375, 382–384, 386, 388–389, 391–392, 427–428 399–400, 408, 413, 415, 419, 434–436, Terminal care, 102, 141, 244, 263, 384–385 439, 441–442, 450 Terminally ill children, 104, 171, 178–179, 213–216, 221, 225–226, 228–229, 257, S 354, 366, 368 Thailand, 8–9, 109, 185–205 Saudi Arabia, 8, 161–166 Training, 5, 7–10, 12, 22–24, 28–29, 31–38, Singapore, 8, 169–183, 198 51, 53–56, 58–59, 66, 70–72, 74–77, Skilled human resources, 66, 71 84, 89, 97, 101, 114–115, 119, 146, Social Security, 11, 103, 211, 213, 149, 151–152, 154, 163–164, 178, 265, 324–325, 332–334, 339, 180–182, 192–198, 202–203, 205, 341–343 242–245, 256, 259–260, 265–266, 271, Social Work Competencies, 310, 312 276, 278, 283, 285–286, 288, 293, 302, South Africa, 6, 27–38, 51, 55, 59, 67 311–314, 316–317, 333, 341, 344, Standards, 6, 8, 33, 48, 55, 66–67, 70, 72, 352, 361–362, 374–375, 384, 388–391, 75–77, 85, 93, 117, 128, 235, 255–256, 398–399, 406, 408–415, 418, 441, 259, 264–265, 276–277, 289, 310, 312, 444–445 314, 316, 360–361, 379, 388–389, Transition, 4, 100, 169, 171, 177–178, 190, 393–394, 415, 445 244, 253, 255, 259, 261, 265, 272, 277, Standards of care, 6, 8, 33, 55, 276, 316, 394, 282, 288, 292, 294, 302, 313, 315, 366, 445 373, 384, 406, 409, 424, 431 Strategies, 5, 32, 66, 68, 70, 119, 149, 152, 229, 278, 281, 288–289, 291, 314, 353, U 399–400, 409, 418, 441, 450 Uganda, 6, 19, 22–23, 32–33, 41–62 Success, 5, 10, 23, 100, 103, 123, 149, 155, Umodzi, 20–25 166, 177, 229, 244, 246, 249, 254, 362, United Kingdom, 10–11, 38, 127, 210, 239, 400, 421, 428 241–242, 255, 258, 260–261, 269–295, Symptoms, 4, 9, 19–22, 29, 33, 52–53, 55, 59, 331, 392, 406 73–74, 88, 95, 97, 101–102, 119–120, United States of America, 11–12, 324, 345, 122–124, 143–144, 148, 150, 153, 174, 359–375 176, 178–179, 194–195, 199, 203–204, 218, 235, 245, 260–264, 280–282, 287, W 295, 307–311, 314, 330, 333, 349–355, Warsaw Hospice for Children, 257 365, 367–370, 373–375, 385–386, 396, 408–409, 411, 413–415, 419, 438–439, Z 442, 444 Zimbabwe, 6–7, 65–77