Cicely Saunders Institute Spotlight on Global Health
Cicely Saunders Institute Spotlight on Global Health
Welcome Professor Richard Harding Director of the Centre for Global Health Palliative Care Professor Irene Higginson Director of the Cicely Saunders Institute
The Cicely Saunders Institute pioneers the very best in palliative
care and rehabilitation through the integration of cutting-edge research, skilled multi-professional care, and innovation in engagement and education. In this booklet we spotlight our global health programme.We have selected examples from the work conducted by our Centre for Global Health Palliative Care, introducing you to some of our collaborative research outputs from around the world. Since the pioneering work of Dame Cicely, palliative care has developed in many parts of the world. Our goal is to build capacity and evidence to continue Dame Cicely’s vision and ensure high quality, personalised palliative care is available to everyone who needs it. Our Centre for Global Health Palliative Care partners with individuals and organisations around the world to build research capacity, generate evidence, inform policy and deliver education. We support our overseas collaborators to discover the answers to locally-relevant questions. We have been a WHO Collaborating Centre for Palliative Care, Policy and Rehabilitation since 2008. We have produced freely available global resources for the WHO; ‘Palliative Care for Older People: Better Practices’ and ‘Palliative Care: The Solid Facts’. As members of the Technical Advisory Group for the WHO we have co-developed and endorsed the latest guidance on Building Integrated Palliative Care Programs and Services, with a focus on evaluation of services. To find out more about what we do, or to get involved, please visit our website www.kcl.ac.uk/palliative Thank you for your interest in our research, and thank you to our funders and collaborators for their support, which has made this work possible.
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The global challenge
Palliative care is internationally recognized under the human right to health. Despite this, a 2014 report by the WHO and Worldwide Palliative Care Alliance which draws on our work, estimated that worldwide, only 14% of those needing palliative care at the end of life actually receive it. Increasing need for palliative care
Rapid global changes present urgent challenges to governments, policy makers, health systems, clinicians, patients and their families. Palliative and end-of-life care is not currently reaching all those who need it, and the gap is greatest for those who live in low and middle income countries, where people are ageing in greater numbers than ever before. At the same time, societies and the social networks that have traditionally cared for older people are changing, due to factors such as migration or family deaths due to the HIV epidemic. Health systems need affordable ways to meet need
Enormous challenges are posed to already under-resourced health systems, especially the emerging need to expand care of the elderly who have multimorbid and complex health conditions. We know that in high income countries, palliative care reduces costs while improving the quality of care. Over the past 15 years, we have been undertaking original research in Africa, Asia, the Americas, Australasia and Europe, to improve care for patients and families, as well as finding ways to support staff to deliver better care.
Spotlight on Global Health
Patient smiles as her pain is controlled with oral morphine during a home visit with a Hospice Africa Uganda nurse.
Spotlight on Global Health
Eve Namisango BuildCARE Africa PhD fellow
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Capacity building
Dame Cicely believed that research is essential to discovering ways to reduce suffering and to ensure patients and families have the best possible care. Our multi-professional postgraduate education programme teaches emerging leaders to develop, evaluate and deliver high-quality palliative care that responds to local needs and works within local health systems. We believe that evidence should underpin all that we do, and research methods training is embedded in all of our wide-ranging modules. We teach our students that best practice in psychological support, spiritual care, or pain management should always reflect the concerns, beliefs and practices of the population in which we are working. Our MSc students, including students from India, the Caribbean and Africa, have produced peer-reviewed scientific publications directly from their MSc studies. Eve Namisango – an emerging leader
Eve Namisango is a biostatistician who lives in Uganda, where she works for the African Palliative Care Association (APCA). She won our competitive Sir Halley Stewart Trust African Scholarship and completed her MSc in Palliative Care, investigating the distressing problem of pain amongst people with HIV in Uganda. She has been our lead researcher for a large evaluation of HIV palliative care in East Africa, and has published widely. Eve is now our BuildCARE Africa PhD scholar, and is working on world-leading research into how to measure and improve care for children with life-limiting illness. Applying her experiences of research training and postgraduate education, Eve is now Research Manager for APCA. At the 2017 European Association for Palliative Care Congress, Eve received special recognition for her role in the development of African indicators for palliative care development and the APCA Atlas of Palliative Care in Africa.
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Education
Our rich academic training environment attracts future leaders in palliative care from all around the world, including Africa, Taiwan, China and Europe. Postgraduate and PhD students benefit from regular clinical evidence updates, journal clubs, methodological skills sessions, researchers’ meetings, an Open Seminar Series and peer support groups. PhD students access a wide-ranging training and skills development programme at King’s and have gone on to hold Professorial posts of their own (e.g. Murtagh, Bausewein, Harding). We also contribute to the undergraduate training programme, and to the intercalated BSc Global Health for King’s medical students. Our multi-professional Certificate, Diploma and MSc courses in Palliative Care, run jointly with St Christopher’s Hospice, enable students to improve their clinical and research skills, and to interact with a diverse set of peers from around the globe. MSc students conduct a limited study on an area of close interest to their career, which often leads to publication, adding to the global discourse on palliative care research. GlobalCARE fellows from Vietnam
Dr Duong Le Dai and Dr Huyen Bui won GlobalCARE scholarships to spend a year with us, both successfully gaining their MSc in Palliative Care. The fellows worked on studies to understand the needs of HIV and cancer patients in Vietnam, and are now back in Ho Chi Minh City where they are working to expand services, including a paediatric palliative care service. “ The MSc programme in palliative care has given me the opportunity to learn from world-leaders in the field and classmates from various countries who bring cross-cultural perspectives to the class. Also, the skills I learned in research design, conducting a systematic review, and data analysis are the ones that I deeply treasure.” Dr Huyen Bui, MSc Alumni
Spotlight on Global Health
“It is a privilege to study palliative care at the Institute, such a vibrant and innovative facility with so many brilliant colleagues from different professions.� Cheng-pei Lin, PhD Fellow from Taiwan
Spotlight on Global Health
Nurse Bhodenl Chanjeri of Island Hospice in Zimbabwe uses the African POS to assess a patient in her home.
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POS around the world helping to improve care
Our research and care partnerships are enabling more patients and families to benefit from person-centred care. By working with care providers as well as national associations and universities, we are able to develop tools which are simple to use and free to download, such as the Palliative care Outcome Scale (POS) family of measures. These have been designed to measure physical symptoms as well as psychological, emotional, spiritual, information and support needs, enabling staff to deliver care which reflects what matters most to patients and families. POS has been adopted widely around the world, with 8,500 registered users from more than 126 countries. We are currently working with partners in regions facing the most rapidly aging populations, including sub-Saharan Africa and China. In these two regions alone our outcome measures will reach a combined population of 2.4 billion people, over a third of the world’s population. The Centre for Global Health Palliative Care provides research partnerships, advice, training and resources to support translations and cultural adaptations of POS measures so that they can be implemented on a truly global scale, while remaining locally relevant. The APCA Africa POS
In collaboration with the African Palliative Care Association, we worked with partners across Africa to develop an African version of POS, which was modified to include relevant cultural factors, such as spiritual wellbeing, and transcend limited patient literacy or language barriers. The African POS is now the most commonly used patient-level outcome measure in Africa. Our colleagues in Vietnam are currently partnering with us to develop and deliver a local version of POS. See more at www.pos-pal.org
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Where POS is helping
Spotlight on Global Health
8,500 Palliative care Outcome Scale (POS) users across 126 countries
Spotlight on Global Health
Hospice Africa Uganda nurse visits a patient at home and shows her how to take affordable liquid morphine.
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Drug availability
The World Health Assembly states that all patients with lifelimiting conditions should achieve ‘quality of life, comfort and human dignity’. The availability of drugs to manage pain and other common symptoms is obviously an essential step toward achieving affordable, effective palliative care around the world. Our global health research has highlighted the unnecessary suffering caused by pain, but our programme of research has also shown that to make a difference we must study those areas that really lead to a difference in the lives of patients and families: policy, clinical education, human rights legislation, and health systems. Hospice Africa Uganda’s public health programme
The morphine roll-out programme of Hospice Africa Uganda was evaluated, and we reported that their new way of using water bottles to introduce oral morphine into home care worked – despite government fears that it would be used inappropriately. Working with Ministries of Health and pharmacies we have also determined that even when drugs are available, they commonly ‘stock out’ – leaving patients at risk of being unable to access essential pain relief. We have also described how pain can cause distress to other family members, and that pain relief is essential to achieving spiritual wellbeing.
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Reaching neglected patients: the example of TB
In recent years, the world has faced the challenge of drug-resistant tuberculosis (TB). Patients with this condition must receive treatment for a long time, face considerable uncertainty and have a high risk of death. There must be support available for patients and families facing uncertainty, to enable them to follow the prescribed drug treatment, reduce the risk of infection and manage the symptoms of the disease and side effects of treatment. Discovering the palliative care needs of drug-resistant TB patients
In partnership with the Hospice Palliative Care Association of South Africa and the University of Cape Town, we have conducted the first research to understand the palliative care needs of drug-resistant TB patients. Our collaboration with the WHO’s STOP TB campaign and the World Hospice Palliative Care Alliance informed the world’s first declaration on TB and palliative care. The most recent version of the WHO’s ‘STOP TB Strategy’ included palliative care for the first time. Our work has identified the high burden of worry, pain and information needs that patients report, and our partnership with policy makers and care providers aims to reduce this burden.
Spotlight on Global Health
We have conducted the first research into understanding palliative care needs of drug resistant TB patients, in partnership with the Hospice Palliative Care Association of South Africa and University of Cape Town.
Spotlight on Global Health
Providing spiritual care, community based palliative care, Namibia. Photo courtesy of Sean Sprague for Maryknoll
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Spiritual care
The idea of ‘total pain’ for people with terminal illness was first described by Dame Cicely. She understood that concerns at the end of life are not limited to physical symptoms, and that the spiritual concerns of patients and families should be addressed to ensure that distress is minimised. The importance of managing spiritual distress
From the work we have previously conducted in African populations, we have developed evidence-based guidelines for other ethnic communities in the UK. Specifically, advanced cancer patients from Caribbean communities talked to us about the ‘pain’ they experienced as a result of their spiritual distress, and how the spiritual support received under palliative care can relieve that pain. Subsequent resources and guidelines were developed in partnership with community groups, who worked with us in public consultation to generate the guidance. We have pioneered the science of measuring spiritual outcomes and this has led to a novel transfer of knowledge between Africa and the UK, with our item in the African POS now adopted in the UK IPOS. We were collaborators on an event held in the Vatican to establish and ratify a global declaration to improve palliative care for older people by bringing together religious leaders from around the world. This resulted in endorsement of the Religions of the World Charter: Palliative Care for Older People led by the Maruzza Foundation.
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Enhancing HIV care
In recent years, the global expansion of HIV treatment has changed the prognosis of the epidemic; more people are surviving and are expected to live to a near-normal life expectancy. Our research programme focuses on optimising the quality of life for people with HIV, to ensure that the gains made in life expectancy are supported by gains in patient self-reported wellbeing. Focusing on the person not the virus
Our international programme of HIV research has revealed that while people are living longer and are often responding well to the HIV medications and treatment plans, there is a very high burden of pain, as well as social, psychological and spiritual issues that persist. These distressing problems are in addition to the continuing challenge of the stigma associated with the condition. Our studies have revealed a need for palliative care availability for all people living with HIV throughout the course of the illness – from the point when people are first diagnosed, alongside treatment, and into ageing and the end of life. This person-centred approach has been piloted in Africa. TOPCare was the first time that a clinical trial has been conducted within the field of palliative care in a low or middle income country. We found that by working with existing HIV treatment nurses, and delivering a simple palliative care training course with a basic patient assessment form for the nurse to use, we can significantly improve patient wellbeing.
Spotlight on Global Health
The TOPCare trial is the first to assess the effectiveness of using existing staff and infrastructure. This is vital in countries with little resource for new clinical staff.
Spotlight on Global Health
Umduduzi Hospice Care for Children, South Africa. Photo courtesy of Umdudzi Hospice Care for Children
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Palliative care for children and young people
Children, young people and families affected by life-limiting and life-threatening illnesses often have a number of serious concerns and face considerable uncertainty. For many years, researchers and clinicians have noted the lack of a simple and meaningful tool to measure concerns and change in health status for this group of patients. However, our collaboration with the African Palliative Care Association has produced the world’s first outcome measure specifically for children and young people. The C-POS
The C-POS builds on the POS family of tools, and is the world’s first tool for use within children’s palliative care services. Developed from interviews with children and young people, as well as their families, caregivers and healthcare staff, it will make a measurable difference within the field of children’s palliative care research. When we reviewed the evidence for children’s palliative care in Africa, we found that the lack of a simple measure meant that very little was known about how effective services are. We are now in a position to support quality improvement through the use of C-POS within this vulnerable patient group.
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The future: working to achieve better care for all
Our unique skills and resources have enabled us to establish global collaborations and to generate the world’s largest output in the emerging field of global health palliative care. The Centre for Global Health Palliative Care is housed within the Cicely Saunders Institute, befitting from the partnership of Cicely Saunders International, King’s College London and King’s Health Partners. We believe that the inequalities experienced during the lives of those who live in low and middle income countries should not continue into their deaths. We also know that those who live in the poorest countries often experience the worst deaths in terms of pain relief, service provision and psychosocial support. We have a vision to expand our collaborations and improve access to high quality and effective palliative care:
• Developing and testing services that address the urgent
challenge of rapid ageing and increasingly complex multimorbidity in low and middle income countries • Creating models of palliative care and outcome measures which respond to locally prevalent illnesses and conditions, such as HIV, TB and certain cancers • Identifying emerging leaders and building their potential for local clinical and academic leadership • Providing demonstrable evidence which can be translated into policy, education and practice by advocates, NGOs and Ministries Research across our core Institute themes (evaluating and improving care, symptom research, measuring outcomes, living and dying in society) will enable the Centre for Global Health Palliative Care to generate the evidence needed to achieve highquality, locally-appropriate and person-centred palliative care.
Spotlight on Global Health
Our partners from University of Cape Town, Hospice Palliative Care Association of South Africa, Hospice Africa Uganda, South Coast Hospice, Philanjalo Hospice, Wits Palliative Care and APCA who validated the APCA African POS.
Spotlight on Global Health
We are passionate about ensuring people live better with life-limiting disease, with dignity, choice and minimal suffering until the end of their lives.
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About us
The Cicely Saunders Institute opened in 2010 and is the world’s only
purpose-built Institute dedicated to palliative care research. It brings together a community of academics, healthcare professionals, community organisations, patients and carers that share knowledge and skills across care settings, countries and disease groups. Palliative care aims to identify and manage the physical, psychosocial and spiritual problems of patients and families facing progressive, incurable illness. At the Cicely Saunders Institute, we are passionate about ensuring people live better with lifelimiting disease, with dignity and choice, and minimal suffering, including to the end of their lives. The Cicely Saunders Institute is committed to pioneering research into palliative care and rehabilitation that feeds quickly into improving care for patients and their families locally, nationally and internationally. Dame Cicely Saunders trained as a nurse, a medical social worker and finally as a physician. From 1948 she was involved with the care of patients with terminal illness, lectured widely on the subject, wrote many articles and contributed to a great number of books. She founded St. Christopher’s Hospice in 1967 and was also involved with the creation of hospice teams around the world. She is universally recognised as the founder of the modern hospice movement. In 2002 she became the founder trustee of Cicely Saunders International and worked actively for the creation of a centre of excellence housing research, education, information provision and clinical care. Dame Cicely died on 14 July 2005. At the Cicely Saunders Institute, we celebrate the continuation of her life’s work.
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Some key references in Global Health Palliative Care
BMJ Global Health 2017 Apr 1;2(2):e000168
‘They will be afraid to touch you’: LGBTI people and sex workers’ experiences of accessing healthcare in Zimbabwe: an in-depth qualitative study Hunt J, Bristowe K, Chidyamatare S, Harding R Journal of Cancer Policy 2016 Dec 31;10:16-20
Palliative Care: When and how, and what are the implications for global cancer policy? Harding R, Luyirika E, Sleeman KE Journal of Pain and Symptom Management 2017 Feb 1;53(2):e3-4
How to establish successful research partnerships in Global Health Palliative Care Harding R, Namisango E, Radbruch L, Katabira ET Palliative Medicine 2016 Oct;30(9):862-8
What palliative care-related problems do patients with drug-resistant or drug-susceptible tuberculosis experience on admission to hospital? A cross-sectional self-report study Harding R, Defilippi K, Cameron D BMC Palliative Care 2016 Jan 22;15(1):9
The needs, models of care, interventions and outcomes of palliative care in the Caribbean: A systematic review of the evidence Harding R, Maharaj S
Journal of Cardiovascular Nursing 2016 Jul 1;31(4):313-22
The prevalence and associated distress of physical and psychological symptoms in patients with advanced heart failure attending a South African medical center Lokker ME, Gwyther L, Riley JP, van Zuylen L, van der Heide A, Harding R The Lancet HIV 2015 Aug 31;2(8):e328-34
Nurse-led palliative care for HIV-positive patients taking antiretroviral therapy in Kenya: A randomised controlled trial Lowther K, Selman L, Simms V, Gikaara N, Ahmed A, Ali Z, Kariuki H, Sheer L, Higginson IJ, Harding R. BMC Research Notes 2015 Apr 30;8(1):172
Palliative care in South Asia: A systematic review of the evidence for care models, interventions, and outcomes Singh T, Harding R BMJ Supportive & Palliative Care 2015 Jun 1;5(2):196-9
The prevalence of life-limiting illness at a Ugandan National Referral Hospital: A 1-day census of all admitted patients Jacinto A, Masembe V, Tumwesigye NM, Harding R BMC Infectious Diseases 2014 Nov 18;14(1):613
Quality of life and wellbeing among HIV outpatients in East Africa: A multicentre observational study Harding R, Simms V, Penfold S, Downing J, Namisango E, Powell RA, Mwangi-Powell F, Moreland S, Gikaara N, Atieno M, Higginson IJ
Support Care Cancer 2014 Dec 1;22(12):3185-92
Palliative care-related self-report problems among cancer patients in East Africa: a two-country study Harding R, Powell RA, Namisango E, Merriman A, Gikaara N, Ali Z, Higginson IJ Health and Quality of Life Outcomes 2014 Aug 2;12(1):118
Self-report measurement of pain & symptoms in palliative care patients: A comparison of verbal, visual and hand scoring methods in Sub-Saharan Africa Blum D, Selman LE, Agupio G, Mashao T, Mmoledi K, Moll T, Dinat N, Gwyther L, Sebuyira L, Ikin B, Downing J, Kaasa S, Higginson IJ, Harding R Health and Quality of Life Outcomes 2014 May 31;12(1):80
Wellbeing among sub-Saharan African patients with advanced HIV and/or cancer: An international multicentred study comparing two outcome measures Harding R, Selman L, Ali Z, Powell RA, Namisango E, Mwangi-Powell F, Gwyther L, Gikaara N, Higginson IJ, Siegert RJ Palliative Medicine 2014 Apr;28(4):293-301
Availability of essential drugs for managing HIV-related pain and symptoms within 120 PEPFAR-funded health facilities in East Africa: A cross-sectional survey with onsite verification Harding R, Simms V, Penfold S, Downing J, Powell RA, Mwangi-Powell F, Namisango E, Moreland S, Gikaara N, Atieno M, Kataike J, Nsubuga C, Munene G, Banga G, Higginson IJ
Journal of Pain and Symptom Management 2014 Apr 30;47(4):786-92
A hospital-based palliative care service for patients with advanced organ failure in Sub-Saharan Africa reduces admissions and increases homes death rates DesRosiers T, Cupido C, Pitou E, van Niekerk L, Badri M, Gwyther L, Harding R Journal of Pain and Symptom Management 2014 Mar 31;47(3):620-30
Public priorities and preferences for end-of-life care in Namibia Powell RA, Namisango E, Gikaara N, Moyo S, Mwangi-Powell FN, Gomes B, Harding R Journal of Pain & Symptom Management 2013 Sep 30;46(3):386-94
Traditional healers’ views of the required processes for a ‘good death’ among Xhosa patients pre- and post-death Graham N, Gwyther L, Tiso T, Harding R Reports WHO Regional Office for Europe, Copenhagen 2010
Palliative care for older people: better practice Hall S, Petkova H, Tsouros AD, Costantini M, Higginson IJ WHO Regional Office for Europe, Copenhagen 2004
Palliative care: the solid facts Davies E, Higginson IJ
Thank you We thank all those who have supported research, teaching and development in the Cicely Saunders Institute including: Action Medical Research Addenbrooke’s Hospital African Palliative Care Association AIDS Star Big Lottery Fund British Heart Foundation British HIV Association British Medical Association Calouste Gulbenkian Foundation Cancer Research UK Cicely Saunders International Columbia University Department of Health Duke Institute on Care at the End of Life Dunhill Medical Trust (note, not associated with the Tobacco Industry and fully comply with the Join Protocol of Cancer Research and Universities UK on Tobacco Industry Funding to Universities, 2004)
Economic and Social Research Council European Commission European Union Family and Friends of Rob Buckman Fondazione Floriani Fondazione Maruzza Lefebvre D’Ovidio Onlus Gatsby Foundation Health Education England Hospice UK Joseph Rowntree Foundation Macmillan Cancer Support Marie Curie Maudesley Charity Medical Research Council Medical Research Foundation Mental Health Foundation Mildmay MND Association MS Society
Myeloma UK National Cancer Research Institute National Council for Palliative Care National Hospice and Palliative Care Organization National Institute for Health and Care Excellence National Institute for Health Research Open Society Foundations Palladium International PF Charitable Trust Public Health England Robert Bosch Stiftung Robert Luff Foundation Ltd Roy Castle Lung Cancer Foundation Sainsbury Family Charitable Trusts Sir Halley Stewart Trust St Stephen’s AIDS Trust Stroke Association The Academy of Medical Sciences The Atlantic Philanthropies The Diana, Princess of Wales Memorial Fund The Dinwoodie (1968) Settlement The Elizabeth Clark Charitable Trust The Garfield Weston Foundation The Health Foundation The King’s Fund The Kirby Laing Foundation The Nuffield Trust The Rayne Foundation The Samuel Sebba Charitable Trust The Wolfson Foundation Union for International Cancer Control United States Agency for International Development Wellcome Trust World Health Organisation
Cicely Saunders Institute King’s College London Bessemer Road London SE5 9PJ T +44 (0)20 7848 5516 E palliativecare@kcl.ac.uk W www.kcl.ac.uk/palliative @CSI_KCL