Interventions at the end of life – social, comparative and historical analysis to promote global improvement. It’s an unwieldy title and it contains a lot of dimensions. It will be a challenging project to design, to conduct and to deliver. But what an opportunity to invest major time and resources in an issue of such importance!
Earlier this year I learned to my delight that I had been successful in obtaining a Wellcome Trust Senior Investigator Award in the Medical Humanities to conduct a four year study on an issue that concerns me greatly – how we die and what we do about it. I will be handing over a large chunk of academic management repsonsibilities to give more time to this subject, which is creating more and more public interest but at the same time lacks consensus, needs more research and is subject to multiple interpretations and viewpoints.
I am concerned that the, globally, we are sleepwalking our way into a major social and public health issue. The number of people dying in the world is going to increase dramatically in the next 20-30 years, from the current 56 million per year to perhaps 90-100 million. The forces driving this are a combination of population growth and population ageing. I have coined the term ‘peak dying’ to indicate that point in the world’s history when more people die than ever before and after which the number will start to decline. Our project will be concerned with the healthcare, social, envirinmental and cultural implications of this. It starts from the assumption that the current, and sterling, efforts of the palliative care community are incommensurate with the scale of need that will develop in the coming years.
Mapping the terrain
The orienting framework for the study is the concept of ‘interventions’ at the end of life. We will have to define precisely what we mean by such interventions. What is clear already is that we will adopt a broad set of inclusion criteria – based on the type of intervention and on its geography. Some interventions may be narrowly focuused at the clincial or service level but wide reaching and impactful in their geographic influence. Others may have expansive global ambitions but very shallow penetration. We will be building a typology of these that I hope will give some clarity to the field. We also want to look at how interventions in the future can be more reflective in advance about their consequences. The principle of ‘responsible innovation’ is something that might help us with this.
Going beyond the mapping process will be a variety of case studies of particular interventions. I am interested here in things that are breaking now and which we might track as they develop – for example the World Health Assembly Declaration on Palliative Care. Will it lead to sustained and measureable change? How might that be determined and what evidence would we look to? There are lots of other declarations in the field that merit attention too, often produced at conferences. The Montreal Declaration of last week is just one example. What are they for, do they have an impact, what is known about them as a category of phenomena?
In additon, we will be looking at some more ‘mature’ interventions that have developed over time and have had the opportunity to yield impacts, results and consequences. I remain convinced that some of these are still poorly understood analytically. Two examples are in the forefront of my thinking here: The Liverpool Care Pathway and Medicare funding for hospice in the USA. Here we see interventions that showed great promise at their outset, were seen as pathbreaking when they were initiated, but which have led to wide-ranging unintended consequences and in these two instances particularly, negative repercussions have resulted. What underlying processes have been at work in this? Can they be described and theorised? And what can we learn from them?
Where are we now?
The project commences on 1st March 2015. This blog was started one year in advance to give the project a ‘soft launch’. Interest is mounting, with 1500-2000 views a month now occurring.
We are also out to advert for staff! Three full time, four year appointments are currently open to applications. The closing date is 12 October. We are looking for: a research Fellow, a Research Associate and a Public Engagement Officer. In a few months we will also be advertising for a Lecturer in End of Life Studies. The positions are based in the University of Glasgow, School of Interdisciplinary Studies at our Dumfres Campus. Excellent facilities and office accommodation in a beautiful rural location are available here; and my goal is to set up a very dynamic team that will work closely with me on a day to day basis. The whole initiative will be fully engaged with social media from the very start and the emphasis will be on creativity and new approaches to problems – especially across disciplines.
Deatils of the posts can be found here:
I am enormously grateful to the University of Glasgow for the terrific help it is giving me to maximise the benefits of the project. We have great support from academic colleagues, but also from the offices for Communications and for Knowledge Exchange. One early innovation is a commission, funded by the University, for a short animated film that will capture the importance, aims and objectives of the project – in 90 seconds. We plan to have this ready for the project start date and possibly to develop a series of such films, presenting our results over time. A longer term goal is a full length documentary feature film about the work of the project.
The Wellcome Trust has already been incredibly helpful – not only in furnishing the grant, but also in encouraging innovative thinking around Public Engagement, Knowledge Exchange and Impact. A workshop in the Spring of this year at the Royal Botanic Gardens in Edinburgh, organised by the Trust, was very useful in this respect and I am aware of a whole range of resources and expertise that will be available to the project from its main funder, as we move forward.
These are exciting times for our incipient Glasgow End of Life Studies Group. If you feel you can contribute, would like to know more about the posts, or have suggestions for our lines of enquiry, please email me at: firstname.lastname@example.org