Palliative Care for Chronic Cancer Patients in the Community : Global Approaches and Future Applications

The new global cancer data suggests that the global burden has risen to 18.1 million new cases per year and 9.6 million cancer deaths per year. A number of factors appear to be driving this increase, in particular, a growing and aging global population and an increase of exposure to cancer risk factors linked to social and economic development. For rapidly-growing economies, the data suggests a shift from poverty- or infection-related cancers to those associated with lifestyles more typical in industrialized countries. There is still large geographical diversity in cancer occurrence and variations in the magnitude and profile of the disease between and within world regions. There are specific types of cancer that dominate globally: lung, female breast and colorectal cancer, and the regional variations in common cancer types signal the extent to which societal, economic and lifestyle changes interplay to deferentially impact on the profile of this most complex group of diseases. Unfortunately, despite advances in cancer care, a significant proportion of patients at home, experience sub-optimal outcomes. Barriers to successful treatment outcomes include, but are not limited to: access to oncologists in the primary health centers, non-adherence, lack of experienced oncology and palliative care nurses in the community, inadequate monitoring and the lack of training of family and pediatric physicians. Telemedicine approaches, including telephone triage/education, telemonitoring, teleconsultation and status tracking through mobile applications, have shown promise in further improving outcomes, in particular for chronic cancer patients following their hospitalization. Lessons can be learned from existing hospices in North America, the United Kingdom, Australia, Centers of Excellence in African (Uganda) and modern community services in India (Kerala). An important goal of this book is to describe and encourage professionals to develop new community programs in palliative care, which include training and empowering physicians and nurses in the community on the principles of palliative care. The Middle East Cancer Consortium (MECC) together with the American Society of Clinical Oncology (ASCO) and the American Oncology Nursing Society (ONS) have conducted multiple courses ranging from basic palliative care to more specialized training in palliative care for multiple nationalities in Europe, Asia and Africa. Our experience clearly indicates that, to promote such activities, one needs strong leadership and confirmed political will to support the endeavor. The new book will emphasize the importance of having a core of multiple stakeholders including community leaders, government, NGOs and media to be actively involved in advocating for the cause and generating public awareness. This text will provide the reader with a comprehensive understanding of the outside-of-the-hospital treatment of cancer patients by medical, paramedical and volunteer personnel. In doing so, this text will encourage the creation of new palliative care services improving upon the existing ones and stimulate further research in this field. Part 1 of the text will begin with an overview of the current state of affairs of services provided to cancer patients while being cared for by primary health centers. It will also review the current literature regarding medical and psychological-based therapy options in the community for cancer patients at different stages of their disease. Part 2 will address the unique role of the community nurse, within the framework of the multidisciplinary team treating the patient, in the attempt to provide optimal evaluation and care in very challenging situations (such as with terminal patients). Part 3 will provide insightful models of this new discipline and serve as a valuable resource for physicians, nurses, social workers and others involved in the care of cancer patients. The book will take a multidisciplinary approach, integrating clinical and environmental data for practical management to enhance the efficacy of treatment while relieving suffering. Part 4 will also discuss the application of modern technological approaches to track symptoms, quality of life, diet, mobility, duration of sleep and medication use (including pain killers) in chronic cancer patients in the community. Part 5 of the book will also be devoted to modes of developing a collaborative program between governmental and non-governmental organization sectors. This includes volunteer workers in close collaboration with medical professionals for providing emotional and spiritual support, nursing care, nutritional support and empowering family caregivers. Such a model makes palliative care in the community a “people’s movement”, thus transferring part of the responsibility and ownership to the community. Front Matter ....Pages i-xxix Front Matter ....Pages 1-1 The Role of the Palliative Care Team in Keeping Pediatric Oncology Patients at Home (Theresa Huntley, Adam Sterman)....Pages 3-13 Information Technology Tools for Palliative Care for Populations (Richard R. Love, Sheikh I. Ahamed)....Pages 15-28 Models of Community-Based Palliative Care (Scharlotte Spencer, Sandra Gomez)....Pages 29-37 Role of the Nurse in the Palliative Care Community (Jeannine Brant, Regina M. Fink)....Pages 39-48 Understanding the Impact of Community-Based Palliative Care (Phyllis Whitehead, Senaida Keating, Shereen Gamaluddin, Carolyn White, Christi Stewart, Kye Y. Kim)....Pages 49-64 Culture and Palliative Care (Lodovico Balducci)....Pages 65-71 Front Matter ....Pages 73-73 Pediatric Hospice Experience in Guatemala: Our History (Linda Marisol Bustamante, Silvia Rivas, Patricia Valverde)....Pages 75-80 Front Matter ....Pages 81-81 Early Integrated Palliative Care in Oncology: Organizational Challenges and Perspectives in France (Rana Istambouly)....Pages 83-104 Front Matter ....Pages 105-105 The Role of the Physician in the Community in Running the Palliative Care Interdisciplinary Team: “Thinking out Loud” (Paolo Tralongo, Aurelio Saraceno, Fabrizio Romano, Daniela Respini, Annamaria Di Mari)....Pages 107-117 Front Matter ....Pages 119-119 The Importance of the Interdisciplinary Team in Running Palliative Care Services in the Community (Bruna Burmeister, Sofia Amado Durão, Carla Marinho Teves, Rita Cunha Ferreira, Ana Sofia Simões, Tânia dos Santos Afonso et al.)....Pages 121-130 Front Matter ....Pages 131-131 Patients Suffering from a Chronic, Irreversible Illness: A Novel Study on the Psychological Intervention out of the Hospital (David Rudilla, Amparo Oliver, Laura Galiana, Claudia Valenzuela, Julio Ancochea)....Pages 133-143 Community Palliative Care in Spain: The Critical Role of Nursing in Its Development (Maria Paz Fernández-Ortega, Julio César de la Torre-Montero)....Pages 145-152 Collaborative Efforts in Developing Pediatric Oncology and Palliative Care Services in the Hispano-American and African Countries (Wilson Astudillo-Alarcón, J. Antonio Salinas-Martin, Jhon Comba Miranda, Zemilson Bastos Brandão Souza)....Pages 153-167 Front Matter ....Pages 169-169 Transforming End-of-Life Care Through Advance Care Planning and Sharing of Information Digitally (Julia Riley, Joanne Droney)....Pages 171-178 Routine Data and Minimum Datasets for Palliative Cancer Care in Sub-Saharan Africa: Their Role, Barriers and Facilitators (Matthew J. Allsop, Johnblack Kabukye, Richard A. Powell, Eve Namisango)....Pages 179-192 Front Matter ....Pages 193-193 Palliative Home Care in Poland: From Times of Political Turnovers to a Well-Structured Integrated System (Aleksandra Ciałkowska-Rysz, Aleksandra Kotlińska-Lemieszek)....Pages 195-200 Front Matter ....Pages 201-201 Palliative and Hospice Care in the Republic of Croatia: An Overview and Personal Experience (Renata Dobrila-Dintinjana, Marin Golčić)....Pages 203-207 Front Matter ....Pages 209-209 Palliative and Supportive Care in Oncology in Montenegro (Nada Cicmil-Sarić)....Pages 211-216 Front Matter ....Pages 217-217 The Critical Contribution of an NGO to the Development of Palliative Care Services in the Community – Encouraging Outcome of the Tanta Project in Egypt (Mohamed Ahmed Hablas)....Pages 219-227 Front Matter ....Pages 229-229 Republic of Sudan - Palliative Care - Hope for the Future (Geraldine Damanhuri, Mohja Marhoom)....Pages 231-239 Front Matter ....Pages 241-241 Cancer and Palliative Care in Morocco (Asmaa El Azhari)....Pages 243-248 Psycho-oncological Support for Children with Cancer and Their Parents: The Soleterre Foundation Experience With the PIOP’s Program (Imane Benlekbir, Damiano Rizzi)....Pages 249-256 Front Matter ....Pages 257-257 Provision of Palliative Care Services for Cancer Patients in the Community in Africa (John K. Weru, Esther W. Nafula)....Pages 259-264 Front Matter ....Pages 265-265 Current State of Palliative Care in Uganda (Elizabeth Namukwaya, Amos Deogratius Mwaka, Eve Namisango, Mark Donald Mwesiga, Julia Downing)....Pages 267-278 Front Matter ....Pages 279-279 Palliative Care: Challenges and Opportunities – A Comparison of the Fee-for-Service System of the United States with Rwanda’s Public Health Approach (Christian R. Ntizimira, Blaise Uhagaze, Olive Mukeshimana, Eric Kabisa, Scholastique Ngizwenayo, Sandra Urusaro et al.)....Pages 281-292 Front Matter ....Pages 293-293 Palliative Care for Cancer Patients in Rural Central Africa: Experiences from Cameroon (Dina Bell Esther Hortense Murielle, Catherine D’Souza)....Pages 295-302 Front Matter ....Pages 303-303 Collaboration Between Palliative Care and Oncology Services and Global Models of Integration (Haris Charalambous, Kyriakos Stylianides, Sophia Nestoros)....Pages 305-314 Front Matter ....Pages 315-315 The Role of the Nurse in the Community in Running the Palliative Care Interdisciplinary Team: The Iranian Experience (Maryam Rassouli, Leila Khanali Mojen, Azam Shirinabadi Farahani, Samira Beiranvand)....Pages 317-338 Front Matter ....Pages 339-339 The Current Situation of Palliative Care Services in Iraq (Samaher Abdulrazzaq Fadhil, Hasanein H. Ghali)....Pages 341-349 Front Matter ....Pages 351-351 The Current Status of Pediatric Palliative Care at Home – The Israeli Perspective (Sergey Postovsky, Myriam Weyl-Ben-Arush)....Pages 353-357 Front Matter ....Pages 359-359 Community-Based Palliative Care in the Arab Region: Current Status and Future Directions (Loai Mohammad Abu Sharour, Huda Al-Noumani, Suleiman Al Sabei, Iman Al Hashmi, Maryam Al Harrasi, Basma Al-Yazidi)....Pages 361-375 Front Matter ....Pages 377-377 The Physician’s Role in Running a Palliative Care Service in the Community: The Lebanon Experience (Ramzi R. Hajjar)....Pages 379-387 Palliative Care in Lebanon: From Inception to Implementation (Myrna A. A. Doumit)....Pages 389-396 Front Matter ....Pages 397-397 Palliative Care for Palestinian Chronic Cancer Patients in the Community (Mohamad H. Khleif)....Pages 399-404 Front Matter ....Pages 405-405 Pediatric Palliative Care in the Community: The Turkish Experience (Rejin Kebudi, Fatma Betul Cakir)....Pages 407-412 The Role of the Community Nurse in Developing Palliative Care Services (Ayfer Aydin)....Pages 413-423 Caring for the Cancer Patient in the Community: In Mind, Body and Spirit (Gonca Tuncel-Oguz)....Pages 425-432 Front Matter ....Pages 433-433 Prevalence and Management of Cancer Pain in Developing Countries (Gamal Abdul Hamid)....Pages 435-443 Front Matter ....Pages 445-445 Palliative Care: The Care That Is Rarely Practiced in Health System of Afghanistan (Maihan Abdullah, Najia Niazi, Musa Pakteen)....Pages 447-454 Front Matter ....Pages 455-455 Palliative Care for Cancer Patients in Armenia: A Silent Pain (Narine Movsesyan, Nune Karapetyan, Gevorg Tamamyan, Jemma Arakelyan)....Pages 457-465 Front Matter ....Pages 467-467 Mobile Teams in Kazakhstan: Improving Cancer Patients’ Access to Palliative Care (Gulnara Kunirova, Dilyara Kaidarova, Tolganai Ansatbayeva)....Pages 469-476 Front Matter ....Pages 477-477 Provision of Palliative Care for Oncological Patients in Pakistan: A Review of Challenges and Current Practices (Muhammad Atif Waqar, Nasreen Muhammad Saleem, Muhammad Shamvil Ashraf)....Pages 479-486 Front Matter ....Pages 487-487 Collaborative Programmes Between Government and Civil Society: Scope, Challenges and Models (Suresh Kumar, Libby Sallnow, Heather Richardson)....Pages 489-496 The Role of the Palliative Care Team in Keeping Paediatric Oncology Patients at Home (Mary Ann Muckaden)....Pages 497-504 Front Matter ....Pages 505-505 Experiences in Extending Palliative Care to Neuro-Oncology Patients in Indonesia (Tiara Aninditha, Henry R. Sofyan, Feranindhya Agiananda, Jonathan Odilo)....Pages 507-512 Establishment of Home-Based Pediatric Palliative Care: The Indonesian Experience (Lynna Chandra, Ying Pin Toh)....Pages 513-517 Front Matter ....Pages 519-519 Network of Primary Palliative Care in Thailand: A Prototype Driven by Education (Srivieng Pairojkul)....Pages 521-531 Front Matter ....Pages 533-533 Community Hospice Care for Cancer Patients in China (Lili Tang)....Pages 535-540 Front Matter ....Pages 541-541 The Role of the Home-Visit Nursing System in the Treatment of Terminal Cancer Patients in Japan (Tomoko Majima, Junko Kusunoki, Tomoko Otsuka)....Pages 543-547 Front Matter ....Pages 549-549 In Vivo Study of Laser Irradiation Techniques for the Treatment and Palliation of Lung Cancer Using Photodynamic Therapy (Necla Kenar, Hyun Soo Lim)....Pages 551-560 Front Matter ....Pages 561-561 Community-Based Palliative Care for Chronic Cancer Patients in the Philippines (Maria Minerva P. Calimag)....Pages 563-571 Front Matter ....Pages 573-573 Australian Palliative Care for Chronic Cancer Patients in the Community (Tim Luckett, Meera Agar, Jane Phillips)....Pages 575-581 Front Matter ....Pages 583-583 Palliative Care for Chronic Cancer Patients: Global Approaches and Future Applications New Zealand (Catherine D’Souza)....Pages 585-588 Back Matter ....Pages 589-599 Palliative Care for Chronic Cancer Patients in the Community: Global Approaches and Future Applications offers a much-needed account of the current state of global palliative care in the community - the good, the bad and, especially, the hopeful. This extraordinary compendium, with chapters form 46 countries, edited by Professor Michael Silbermann, tells the remarkable stories of palliative care - from grass-root efforts by volunteers in resource-constrained countries such as India to the full integration of palliative care in high-resource countries such as the United States, the United Kingdom, New Zealand and Australia. What is so unique about this book is that it captures the enormous range and diversity of palliative care efforts: some led by nurses (Iran), some led by governments (Turkey) and many led by local charities and non-governmental agencies. Readers of this textbook can also learn about the challenges of a government-led palliative care initiative in the post-genocide era in Rwanda or the attempts to provide palliative care services in the conflict zones of Iraq, Palestine and Sudan. Contextual issues requiring cultural sensitivity in Afghanistan, Latin America and the Middle East present a real picture of both the exceptional leadership and environmental hardships that palliative care advocates face in their journeys forward. Each of the 53 chapters in the book tells a narrative of the country's own experience, thus creating a source of on the ground information outlining the barriers, challenges and successes as individual efforts progress. Many reports in the book point toward real change and hope as they relate to healthcare providers becoming empowered advocates for their patients. There are high expectations for the role of nurses to continue to grow. Educating and engaging patients, and the families in their care, has had a measurably positive impact on outcomes. The collaborative spirit of this book gives voice to the incredible vision, tenacity and resilience of the teams of professionals and their supporters who work in palliative care, particularly those who work in the community. In addition, it underscores that all future efforts can only be successful with the concerted and continuous commitments of governments, academics and NGOs across and within national boundaries. - HRH Princess Dina Mired President - Union for International Cancer Control (UICC)