Palliative care – the relief of the pain, symptoms and psychosocial and spiritual problems experienced by patients and families facing life-limiting illness - is recognised as an essential part of the healthcare system. Despite this, access to hospice and palliative care worldwide is still inadequate for millions of people. 80% of those in need are living in low- and middle-income countries. As the ageing population increases the world over, a greater number of people are living and dying with more complex health conditions make the need for access to integrated palliative care more pressing.
Source: World Health Organisation
The World Health Organisation and Worldwide Palliative Care Alliance estimated that in 2014, only 1 in 10 people who needed palliative care were currently receiving it, with 80% of those in need living in low- and middle-income countries. Every year, more that 20 million patients need end of life care, of which 6% are children. This number rises to 40 million if those that could benefit from early intervention palliative care are included, which is further doubled if support to family members of those with illness were also involved. In 2014, the World Health Assembly passed its first resolution on palliative care, in recognition of the evidence that palliative care improves outcomes and saves costs.
The Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation is a collaboration between King's College London and Cicely Saunders International, which has taken the pioneering work of Dame Cicely (who founded the modern hospice movement) to ensure that her vision of research driving better care is supported throughout the world. The Institute brings together academics, healthcare professionals, community organisations, patients and carers in one centre and acts as the hub for a network of international research. It offers high quality palliative care solutions to patients, as well as providing education, patient information and support. In partnership with Cicely Saunders International, the Institute's global health programme combines expertise in outcome measurement, cancer and non-cancer care (particularly HIV and heart failure), culture and ethnicity, spiritual care, and intervention development and testing. The Institute's partnerships span sub-Saharan Africa, Asia, Europe, North America and Australasia. Its approach is to develop partnerships that discover new knowledge to address local need for appropriate and effective palliative care, building local capacity and developing the highest quality evidence.
Research interests and partnerships
Below are just some of the areas of interest and partnerships in Palliative Care. Full details of all the projects are available on the Cicely Saunders Institute webpages (link at bottom on this page).
- Incorporating Palliation through Audit and Quality (IMPAQT) is a programmed funded by the European Commission. It is designed to transfer the outcome and quality programme into primary and secondary care for COPD and heart failure patients in primary care. The programme also assists organ failure patients in acute care settings.
- In the field of HIV rehabilitation, our program of clinical and academic collaboration is developing an testing new ways to optimise quality of life. Dr Richard Harding spent time working with the White House and the Department of Health and Human Services to develop the palliative care component of the President’s Emergency Plan for AIDS Relief (PEPFAR). As a result, the department. This led the US Government’s largest ever Public Health Evaluation, based in East Africa.
- The palliative care department at King's worked with the African Palliative Care Association (APCA) to develop and test the world’s first outcome scale for children with palliative care needs. The African Palliative Care Association Palliative Care Outcome Scale (APCA POS) is now rolled out in routine practice.
- DINAMO is a programme funded by the Calouste Gulbenkian Foundation and aims to enhance advanced training and research to optimise home palliative care in Portugal.
- Under BuildCARE (Building Capacity, Access, Rights and Empowerment) programmes aim to develop fellows and evidence in partnership with Ireland, the USA and Asia. BUILDCare Africa is specifically developing research capacity through PhD and MSc scholars, training and original research mentorship.
To see a full list of who we collaborate with in the area of palliative care, please see our Partner and Funders webpages.
Making an impact
A public health response is essential to meet the multidimensional needs of patients and families affected by HIV disease in sub-Saharan Africa. In order to appraise current provision of HIV care in East Africa, and to provide evidence-based direction to future care programming, a public health evaluation was commissioned by the PEPFAR programme of the US Government.
The research involved sampling from facilities currently funded by PEPFAR to provide HIV care and support in Kenya and Uganda, and interviews with staff, patients and carers. This was in order to explore and understand service issues and care provision in more depth. It also involved a longitudinal prospective study of 1200 patients attending PEPFAR care and support services who have been newly diagnosed with HIV or patients with HIV who present with a new problem.
This novel mixed methods protocol will permit transparent presentation of results. It will offer a substantive model of protocol design to measure and integrate key activities and outcomes that underpin approaches disease management in low-income public health systems.
To date, the Institute's work on outcomes through the Palliative Outcome Scale (POS) has enabled clinicians and researchers to access free outcome measures, support tools and learning resources, with almost 6,000 registered users in over 100 countries.
The Palliative Care Outcome Scale (POS) was designed to overcome some of the limitations associated with existing outcome measurement scales in palliative care. It evolved using a literature review of measures, work by a multi-professional project group with individuals who worked in different palliative care settings and a patient representative. The POS was then piloted in hospice, home, hospital and other community settings. The questionnaire covers: physical symptoms, psychological symptoms, spiritual considerations, practical concerns, emotional concerns and psychosocial needs.The POS is mainly used by hospices and palliative care organisations and primarily as a tool for quality improvement and audit.
The impact on care and treatment can be identified in two ways. The impact is direct, where the use of the POS by organisations delivering palliative care has led to improvements in the way the care is delivered. There are also indirect impacts, where use of the APCA POS as an advocacy tool or as part of research, demonstrates the value of palliative care and leads to greater general access to it.
Education and training
- Palliative Care MSc
- Palliative Care PhD
- Contributions to Global Health & Social Medicine MSc
- Cicely Saunders International PhD Training Fellowship Programme (contributing to the overall aims of the BUILDCare and IARE programmes)
- Cicely Saunders International Faculty Scholars (key arm of the BUILDCare project)
- MBBS Intercalated Global Health BSc- palliative care
Find out more about the activities of the Cicely Saunders Institute
05 July 2017