Audacity to Love. The Story of Hospice Africa. hope and peace for the dying. Dr Anne Merriman

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1 In palliative care we are on the coalface of death Audacity to Love The Story of Hospice Africa hope and peace for the dying by Dr Anne Merriman Founder and Director of Policy and International Programmes, Hospice Africa Every pain that is relieved and every symptom that is improved is a little resurrection for our patient Anne Merriman

2 ABOUT THE BOOK Audacity to Love is a book of hope, written by the Founder of Hospice Africa for volunteers, donors and students of palliative care, for those who may come to help in Hospice Africa Uganda (HAU), and for anyone who knows in their hearts that we can all make a difference. Palliative care and hospice services for patients with advanced malignant disease such as cancer have developed rapidly since 1967 when Cicely Saunders, founder of the modern hospice movement, opened St Christopher s Hospice in London. However, it is in Africa that there has been the greatest need for palliative care since the rise of the AIDS epidemic. In most African countries AIDS is on the increase but in some it is starting to reduce. Cancer, however, is now estimated to kill more people in the world than AIDS, TB and malaria combined. By 2020 in Africa there will be one million deaths a year from cancer, representing 10% of the world s cancer deaths. Hospice Africa was conceived with a vision of palliative care for all in need in Africa. This would be done by means of a model Hospice suitable to the cultural and economic needs of Africa and adaptable to other countries. In Audacity to Love Anne Merriman tells the story of Hospice Africa, from the spiritual development of Hospice, its religious associations with the early Catholic Church, to the roots of the creation and development of Hospice Africa today. The story of this miracle of care began in Singapore in 1984 with the first survey of patients who were sent home because there was nothing more to be done. Dr Merriman realised the huge need in Africa for palliative care after witnessing the suffering in Nairobi in After working for Nairobi Hospice as Medical Director and in Warwick and Birmingham while bringing the initial UK Board together, Merriman and her colleague undertook a feasibility study in four African countries, seeking a suitable country for a model. Uganda was chosen and the work commenced late in She tells the personal stories of those she worked with as well as of patients, of lessons learned in countries such as Nigeria, and of support received in setting up HAU. Finally she explores the hospice ethos with the hospice as host and the patient as guest the spiritual aspects and principles behind palliative care, the problems and challenges the hospice movement faces and, ultimately, the importance of the special calling of working with the dying. NOTE: ALL PROCEEDS FROM THE SALES OF THIS BOOK WILL GO DIRECTLY TO HOSPICE AFRICA TO HELP CONTINUE AND EXPAND THE WORK

3 AIMS OF THE BOOK To provide a uniquely authoritative survey and history of palliative care in Africa To chart the story of the growth and development of Hospice Africa and Hospice Africa Uganda from the personal point of view of its Founder To offer a personal memoir of Merriman s career in working with the sick and terminally ill To explore the spiritual and ethical principles behind hospice and palliative care To serve as a practical guide for those intending to work in the area of hospice and palliative care. To preserve the philosophy of dedicated volunteerism, encouraging those with more, to give to those with less. TARGET MARKET Doctors, nurses, health professionals, fieldworkers, hospice teams and volunteers; students of medicine and of African social studies; interested lay readers Primary market: Secondary market: Tertiary market: Doctors, nurses, health professionals, fieldworkers, hospice care teams Students of medicine and of African social studies Interested lay readers TERRITORY UK, Ireland, USA, Africa, France, Netherlands, Singapore BOOK DETAILS Book title: Audacity to Love Subtitle: The Story of Hospice Africa: Hope and Peace for the Dying in Resource-Strapped Countries Author: Dr Anne Merriman Affiliation: Founder and Director of Policy and International Programmes, Hospice Africa Publisher: Irish Hospice Foundation Country of publication: Ireland Year of publication: 2010 Book size: Demy 8vo (140 x 480 mm) Extent: 240 pp. (inc. photos, figures, tables, footnotes and index) Illustrations: 50 b&w photographs, 12 colour figures ISBN: RRP: (GBP) / / $16.99 (USD)

4 ABOUT THE AUTHOR Dr Anne Merriman, MBE, MB, BCh, DCH, DTM&H, MCommH (Lpool), FRCM (Nig), AM(Sing), FRCP (Edin), FRCP(Ire), FJMU, DSc(Hon) Founder and Director of Policy and International Programmes, Hospice Africa Honorary Teaching Fellow, International Observatory on End of Life Care in the Institute for Health Research, Lancaster University, UK Born in Liverpool in 1935, Anne s career spans 57 years, of which 28 have been spent working in Africa (including 10 in Nigeria as a Missionary Sister doctor and 17 in Uganda), 7 in SE Asia and the remainder in the UK and Ireland. She is the Founder of Hospice Africa and introduced palliative care to Uganda in Presently she heads their International Programmes which are supporting new initiatives in Nigeria, Cameroon, Sierra Leone, Malawi, Ethiopia, Zambia and plans are in place seeking a model for French-speaking countries. She introduced palliative care into Singapore in 1985, which became formalised and an accepted form of care with the founding of the Hospice Care Association in 1989, while Senior Teaching Fellow in the Department of Community, Occupational and Family Medicine (COFM) in the National University of Singapore. Today this service is one of the best in SE Asia. She returned to Africa in 1990, initially to Nairobi, before founding Hospice Africa. Her concern is the relief of the suffering and provision of holistic care to the millions of patients and families in Africa suffering from or affected by cancer and/or AIDS. Anne is Founding Vice Chair of the Board of both the Palliative Care Association of Uganda (formed in 1999), and African Palliative Care Association (formed in 2005). She is also a Board Member of Hospice Africa UK and Hospice Africa Uganda. She has been a Board Member of the International Association for Hospice and Palliative Care (IAHPC) and is presently Vice President for E Africa of the African Organisation for Research and Training in Cancer (AORTIC). Her contribution to health and relief of pain in the world has been recognised with the following awards: 2001 July: Honorary Fellowship of Liverpool John Moore s University, for contribution to medicine and relief of pain in the world Jan: New Years Honours List (UK): awarded MBE for services to health in Uganda 2002 Jan: Individual Award for Contribution to the spread of palliative care in the world by the International Association of Hospice and Palliative Care (IAHPC) 2007 June: Honorary Fellowship from University College Dublin, for contribution to palliative care in Africa 2009 July: Honorary Doctor of Science from Edge Hill University, Ormskirk, for dedication to pain relief in Africa Anne has published more than 90 articles, four books and is editor and a peer reviewer for several journals. She is sought as a speaker for several international conferences and is advocating for affordable and culturally appropriate palliative care for African countries.

5 CONTENTS Dedication Foreword Why Audacity to Love? Preface by Jan Stjernsward, International Director of WHO Collaborating Center for Palliative Care Acknowledgements PART I SETTING THE SCENE Hospice Uganda, poem by Hilary Elfick 1 Introduction 2 To Help the Suffering of Africa 3 From Medical Missionary to Palliative Care Consultant PART II HOSPICE AFRICA: HISTORY AND DEVELOPMENT 4 What Is Palliative Care? 5 A Short History of Palliative Care 6 The Birth of the Light 7 Hospice Africa in Utero 8 Hospice Africa Uganda: Birth Pangs 9 Initial Support 10 Challenges and Blessings of Colleagues and Governments 11 The Birth of Mobile Hospice Mbarara and Little Hospice Hoima, HAU and Palliative Care in Uganda Today 13 A Day in the Life of a Hospice Nurse in Kampala by Rose Kiwanuka and Martha Rabwoni PART III HOSPICE AFRICA: PRINCIPLES AND PRACTICE 14 Spirituality 15 Development of the Hospice Ethos 16 Moving and Shaking in Hospice Africa and Beyond 17 Me, Myself New Initiatives, Donor Experience in Africa 19 Brain Drain, Costing and Clinical Standards 20 Hospice Africa Worldwide and the Struggle for Funding 21 The Man with the Key Has Gone 22 The Story of Affordable Opioids in Africa 23 The Unforeseen 24 Passing the Baton 25 Dying in Uganda 26 So What About My Own Death? 00 Appendix A: Living While Dying (first published in Contact, no. 122, October 1991, Christian Medical Commission, Geneva) Appendix B: Appendix C: Index Do s and Don ts for Volunteers and Health Workers Ethos and Spirit of Hospices in Africa