Palliative and end of life care is still a small field of activity, but it has quickly developed a global network of people who want to work together, often in productive ways. It was my pleasure in the last few weeks of 2018 to welcome to the University of Glasgow, Dumfries Campus some of the world’s leading activists in palliative care research and development. Each one showed an enduring generosity of spirit which makes for the most rewarding and enjoyable collaboration. When the links are international, a willingness to embrace other perspectives can be provocative, but also deeply insightful. Our End of Life Studies Group is fortunate to have these, and many other great collaborators around the world.
Here are some examples of ‘putting heads together’ for wider benefit.
Denmark
Helle Timm is a cultural sociologist working at the Danish Centre for Rehabilitation and Palliative Care (RHEPA). We first got to know each other through a shared interest in hospice history and a mutual curiosity about how to measure palliative care development at the national level. When Helle suggested I join her team as a visiting professor, I jumped at the chance. Working with her colleague Lene Jarlbaek, we have been able to conduct the a study of imminence of death in a cohort of Danish hospital patients, replicating work previously done in Scotland and New Zealand. On my twice yearly visits to Denmark I have also been able to visit hospices and cancer support centres of various kinds, learning much in the process and also getting to know the full range of staff working at RHEPA.
Helle visited Dumfries in November 2018 to work with me on a new paper comparing the shared and separate histories of palliative care and rehabilitation and reviewing the current scope for closer integration between the two fields of practice. We want to argue that there is great benefit to be gained in a closer alignment between the two, but first each must emerge from its silo and begin to forge a new language and mode of working that is most relevant to contemporary needs and less aligned to institutional histories and the boundaries they impose. For me, this is a fascinating new area. I’ve been quickly drawn into the history of rehabilitation, but like my clinical and research colleagues at RHEPA, I am also intrigued by the interesting models of joint working that are emerging when rehabilitation meets palliation.
A few weeks after Helle’s visit, I was pleased to be with two wonderful colleagues from India.
Kerala
Based at the Institute of Palliative Medicine in Khozikode, Suresh Kumar is the acknowledged guru of community palliative care in Kerala. Over the last 20 years he has sought ways to foster community programmes, gain massive community support, and influence health policy across the state. The results have attracted interest from all around the world. It was wonderful to welcome him to south west Scotland for the first time and to arrange for him to speak to our students as well as the annual conference of the Scottish Partnership for Palliative Care. A few weeks earlier our undergraduates had been working on a case study of the Kerala palliative care model, and now here they were listening to one of its founders and getting to ask direct questions about how it all works.
Devi Vijay is a social scientist working in the Indian Institute of Management in Kolkata. We met when I first read material from her doctoral studies in which she analysed the organisational forms taken by the Neighbourhood Networks in Palliative Care in Kerala. This led to a collaboration in which we worked on a study of the transfer of the Kerala model to the strikingly different context of the state of West Bengal.
Suresh and Devi were in Dumfries for the ‘kick off’ meeting of a new project funded by the Scottish Funding Council and the Global Challenges Research Fund. Other team members from the University of Glasgow End of Life Studies Group include Sandy Whitelaw and Gitte Koksvik, from the School of Interdisciplinary Studies, plus Ben Colburn and Jennifer Corns, from the School of Critical Studies. The team draws on an array of disciplines including medicine, management studies, philosophy, health policy and evaluation, sociology and anthropology. Putting heads together in a remarkable way!
Photograph by Emma DoveOur project begins by acknowledging that the specific form of community organised palliative care in Kerala is widely hailed as a low-cost, resource effective model for other countries, but despite its impressive growth since the late 1990s and endorsement in state-level policy and legislation, the model remains weakly evaluated. Our goal in the coming months is therefore to establish an evaluation framework to assess its quality and outcomes, using community-led perspectives. Our grant enables us to work together to formulate an approach to this challenging form of evaluation and build an appropriate methodology. In the longer run we hope to gain the resources to implement it.
Our discussions were fruitful, respectful and rewarding. Within the time and resources available, we agreed, as Ben Colburn put it, to focus on ‘what we can do as a team that is most distinctive’. Devi emphasised the need to contextualise our thinking and proposals relating to the service and the evaluation. She used some key examples like ‘risk’ and ‘privacy’ to illustrate this. Her introductory talk also highlighted the importance of recognising interdependency, creating inclusive spaces, egalitarianism, deepening solidarities, and emplacing within neighbourhoods – all important aspects of community palliative care in Kerala, but themes rarely observed in the palliative care evaluation literature.
As our exchanges deepened, and stimulated by an overview of evaluation models and methods, we became more and more aware of the complexities of the overall context of palliative care service organisation and delivery in Kerala. We noted the absence of a publication that sets out the whole model in a definitive mapping. We tried to clarify the roles and histories of the three main provider groups for community palliative care in Kerala – Community Based Organisations, Local Self Government Institutions, and Primary Health Care Services. We also acknowledged the many other stakeholder organisations that exist in the Kerala palliative care ‘space’.
Towards the end of our meeting, Suresh advanced the notion that we should think less about the ‘replicability’ of the Kerala model in other settings, but rather look to the model for lessons that can be transferred to other primary care and community settings. These lessons should be located within the context of the World Health Assembly (2014) Resolution on Palliative Care and the Astana Declaration on Primary Health Care (2018). We had thus arrived at a global end point for our plans, located precisely within the current policy context – something close to the heart of our final set in international visitors for 2018.
Spanish links and worldwide dimensions
I first began working on a ‘world map’ of palliative care more than 15 years ago. It categorises each country in the world into six levels of development that can be compared over time. World map #1 was published in 2008 and world map #2 appeared in 2013. We know that these maps are widely cited and have been used extensively by palliative care activists and policy makers to drive development. Over the past year, as part of my Wellcome Trust Investigator Award, we have been working on world map #3, now with a much refined methodology and in collaboration with our colleagues in the Atlantes research group at the University of Navarra, Spain, led by Professor Carlos Centeno.
During late 2017 and early 2018 we worked closely with Carlos and his colleagues and with Stephen Connor at the Worldwide Hospice and Palliative Care Alliance on our methodology, and developed an online survey of in-country experts that contained a set of 10 palliative care indicators to measure development, worldwide. From spring 2018 data collection proceeded steadily, under the guiding hand of Nicole Baur, the lead researcher on the project. We received responses from a large majority of the 198 UN recognised countries in our study, and along with some use of secondary literature and material from existing atlases of palliative care, we found ourselves staring a huge volume of data. It was time to ‘dive deep’ with the analysis.
Carlos and his colleague Eduardo Garralda generously agreed to come to Dumfries at short notice to work with us for two whole days. We refined our analytic algorithms in light of real data considerations and produced a clear diagram of how the data was collected. World map #3 is now within our grasp! In the early months of 2019 we will prepare the maps, seek to publish a detailed methods paper with Wellcome Open Research, and then draft a full paper presenting the results of the study. We know it will be eagerly awaited by many palliative care activists, policy workers and researchers around the world. The work has been based on the collaborative efforts of an international team of researchers, but most important of all, it has been made possible by hundreds of key persons worldwide who have shared with us the best available knowledge about palliative care in their country.
Collaboration is undoubtedly a core aspect of efforts to promote the global improvement of palliative and end of life care. It is a key dimension of the work of the Glasgow End of Life Studies Group, as many other posts on this blog will attest. Collaboration has many virtues. The Scottish philosopher David Hume, with a highly pragmatic emphasis, captured some of them: ‘Your corn is ripe today; mine will be so tomorrow. ‘Tis profitable for us both, that I should labour with you today, and that you should aid me tomorrow’.