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Innovation • Impact INNOVATION • IMPACT THE FOUNDATION OF COMMUNITY- BASED END-OF-LIFE CARE IN HONG KONG EDITED BY Iris K. N. Chan, Candy H. C. Fong, Eva Y. Wong, Vivian W. Q. Lou & Cecilia L. W. Chan 1 EDITORIAL CONTRIBUTORS COMMITTEE This publication is edited by The contributors to this publication are: the HKU Team under the Jockey Cecilia L. W. Chan Antony C. T. Leung Club End-of-Life Community Care Cecilia N. C. Chan Arnold T. T. Leung Project (JCECC): Helen Y. L. Chan Edward M. F. Leung Project Director Imelda C. Y. Chan Pamela P. Y. Leung Professor Cecilia L. W. Chan Iris K. N. Chan Phyllis P. H. Leung Project Investigator Alvina W. S. Chau Faith C. F. Liu Dr Vivian W. Q. Lou Tracy W. T. Chen K. H. Liu Senior Training Officer Amy Y. M. Chow Vivian W. Q. Lou Miss Iris K. N. Chan Dr Candy H. C. Fong Gloria K. M. Chun Rain N. Y. Lui Roger Yat-Nork Chung C. W. Man Project Officer Miss Eva Y. Wong Candy H. C. Fong Iris P. M. Mak Francis T. W. Fung Katy H. T. Poon The Hospital Authority Jean Woo Brenda W. S. Koo Eva Y. Wong Anna Y. Y. Kwok Francis K. Y. Wong Kimmy K. Y. Lam Paul K. S. Wong M. C. Law Eng-Kiong Yeoh Joyce K. T. Lee Charlotte L. Y. Yu Judy S. H. Lee Eric L. T. Yu INNOVATION • IMPACT: THE FOUNDATION OF COMMUNITY-BASED END-OF-LIFE CARE IN HONG KONG Edited by The Jockey Club End-of-Life Community Care Project Published by The Jockey Club End-of-Life Community Care Project Address Room 811, 8/F, The Jockey Club Tower Centennial Campus, The University of Hong Kong Pokfulam Road, Hong Kong Email [email protected] Telephone 3917 1221 Fax 2517 0806 Website www.JCECC.hk Publish date April 2019 (1st edition) ISBN 978-988-13636-5-7 This book is not for sale. The copyright of this book belongs to The Hong Kong Jockey Club and the Faculty of Social Sciences of The University of Hong Kong. Interested parties are welcome to reproduce any part of this publication for non-commercial use. Acknowledgement of this publication is required. © 2019 by The Hong Kong Jockey Club and the Faculty of Social Sciences of The University of Hong Kong CONTENTS FOREWORD 6 PREFACE 10 ABOUT “JOCKEY CLUB END-OF-LIFE COMMUNITY CARE PROJECT” 11 CHAPTER 1 Introduction 15 PART I: Imelda C. Y. Chan, Cecilia L. W. Chan, Iris K. N. Chan and Candy H. C. Fong INTRO- CHAPTER 2 Development in End-Of-Life Care:A Global Perspective 29 DUCTION Amy Y. M. Chow and Iris K. N. Chan CHAPTER 3 Policy Directions for End-of-Life Care in Hong Kong 41 Roger Yat-Nork Chung and Eng-Kiong Yeoh CHAPTER 4 Strategic Service Framework for Palliative Care in Hospital Authority 57 The Hospital Authority CHAPTER 5 A Pathway towards Evidence-Based PART II: Community-Based End-Of-Life Care in Hong Kong: Building a Common Evaluation Framework 73 INNOVATIVE Iris K. N. Chan and Charlotte L. Y. Yu END-OF-LIFE CHAPTER 6 Haven of Hope Christian Service: “Hospice at Home” Programme 97 CARE Tracy W. T. Chen, Paul K. S. Wong, Antony C. T. Leung, Eva Y. Wong, Iris K. N. Chan and Cecilia L. W. Chan COMMUNITY CHAPTER 7 Supporting Patients at their End-Stage of Life: SERVICES A Volunteer-Partnered Community Capacity Building Approach 115 Iris K. N. Chan, Arnold T. T. Leung, Kimmy K. Y. Lam, Francis K. Y. Wong, Katy H. T. Poon, Francis T. W. Fung and Vivian W. Q. Lou CHAPTER 8 Family-Oriented Care Model in Community-Based End-of-Life Care 133 Amy Y. M. Chow, Alvina W. S. Chau, Eric L. T. Yu and Iris P. M. Mak CHAPTER 9 Improving Quality of Life for Patients and Families with Late-Stage Non-Malignant Chronic Diseases: A Holistic Integrated Community-Based Model 151 Rain N. Y. Lui, M. C. Law, Anna Y. Y. Kwok, Judy S. H. Lee, Joyce K. T. Lee, Pamela P. Y. Leung, K. H. Liu, Candy, H. C. Fong and Cecilia L. W. Chan 4 CHAPTER 10 End-of-Life Care Competences for All: PART III: Building a Cross-Cutting Core Competency Framework for Health and Social Care CAPACITY Professionals in the Community 171 BUILDING IN Iris K. N. Chan and Amy Y. M. Chow CHAPTER 11 Healthcare Professional Capacity Building COMMUNITY- within Hospitals 191 Jean Woo BASED CHAPTER 12 Capacity Building for Staff at END-OF-LIFE Residential Care Homes for the Elderly 203 Edward M. F. Leung, C. W. Man, Faith C. F. Liu, CARE Cecilia N. C. Chan, Gloria K. M. Chun and Helen Y. L. Chan CHAPTER 13 Empowering Professional Competency in the Wider Community Settings 217 Candy H. C. Fong, Iris K. N. Chan, Eva Y. Wong, Phyllis P. H. Leung, Brenda W. S. Koo and Cecilia L. W. Chan CHAPTER 14 Changing Minds and Communities: The Use of Innovative Strategies in Community Engagement for End-of-Life Care in Hong Kong 231 Eva Y. Wong, Iris P. M. Mak, Candy H. C. Fong and Cecilia L. W. Chan CHAPTER 15 Building Volunteer Collaborative Leadership: An Academic Community Partnership Initiative 249 Francis T. W. Fung, Iris K. N. Chan and Vivian W. Q. Lou CHAPTER 16 The Future of Community-Based End-of-Life Care PART IV: in Hong Kong: Some Concluding Thoughts 271 Amy Y. M. Chow, Iris K. N. Chan and Cecilia L. W. Chan CONCLUSION GLOSSARY 278 5 FOREWORD Hong Kong is facing a rapidly ageing population. Not only is the number of elderly people suffering from terminal illnesses set to increase, but also the demand for end-of-life care (EoLC) will see significant growth. People have come to recognise that a good death is an important part of a quality life, while ageing in place is a preference expressed by the majority of the elderly. Yet there is insufficient service provision and a lack of care and treatment choices in Hong Kong to allow elderly people to die with dignity and comfort at the end of their life. To address these evolving challenges, The Hong Kong Jockey Club Charities Trust initiated the Jockey Club End-of-Life Community Care (JCECC) project in 2015 with a vision to promote the quality of dying for terminally-ill seniors. The Trust has brought together key stakeholders of the social and health care sectors to pilot five community-based EoLC service models in this multi-disciplinary, multi-institution and cross-sectoral collaboration. We hope to enhance community EoLC at three levels: at the individual level, to allow patients an informed choice of care and improve both their own quality of life and that of their caregivers during their last days; at community level, to increase public knowledge and understanding of end-of-life concepts, such as advance directives and advance care planning; and at system level, to drive systemic change in the delivery of such services by building the competence of EoLC practitioners. This will strengthen the capacity of the field as a whole, as well as establish evidence-based practices that can be used as reference for future service development. With the concerted efforts of our partners, we are encouraged that about a quarter of all subvented elderly homes in the city have already participated in this project in the past three years. The five community service pilots have also helped make home-based care a reality for over 3,700 terminally-ill patients and their family members. We are equally encouraged that over 9,400 professionals and front-line workers have been trained under the project, with more than 560 volunteers joining hands to support EoLC. To further strengthen the sustainable development of EoLC in Hong Kong, the Trust has extended the project for another three years, with an enhanced integrated service model and extended coverage of EoLC programmes in elderly homes. On behalf of The Hong Kong Jockey Club Charities Trust, I would like to express my heartfelt thanks to all those involved, and particularly The University of Hong Kong for their tremendous effort in compiling this booklet. We believe that with the experience of the project implementation and evidence-based service models it documents, the booklet will further facilitate intellectual exchanges on EoLC in Hong Kong. Ageing is a normal and natural process that everyone must undergo, and the Club would like to help make the journey more fulfilling and colourful. I believe that through our collaborative efforts, we can make our city a more caring community. Mr. Leong Cheung Executive Director, Charities and Community The Hong Kong Jockey Club 6 FOREWORD Hong Kong is facing a rapidly ageing population, and so end-of-life care is an important issue for our community, yet it is easily neglected owing to the traditional Chinese cultural taboo of talking about death. Because of these sensitivities, raising public awareness and scholarly understanding about end-of-life care is important if we are to provide greater care for patients and families going through this inevitable stage of life. The Faculty of Social Sciences of the University of Hong Kong is dedicated to addressing social well-being issues in order to make a difference to society and humanity. The University is grateful to the generous support from The Hong Kong Jockey Club Charities Trust, which enabled us to work together with the Chinese University of Hong Kong and five NGO partners to launch the Jockey Club End-of-Life Community Care Project (JCECC) in 2015.
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