It was in one of our first meetings of the ‘Global interventions at the end of life‘ project in early 2015 that we initiated discussions on the possibility of studying ‘declarations’ on end of life issues. Nearly four years on, I am delighted that our third paper on research into declarations is now published –
Representations of palliative care, euthanasia and assisted dying within advocacy declarations
Our earlier papers on the subject dealt with mapping what we considered at that time as a ‘new’ form of intervention. With the earliest declaration dating back to 1974, we soon learned that the practice of issuing advocacy documents of this kind perhaps wasn’t so novel. We did find however that there has been an immense increase in the number and frequency of declarations produced since then, particularly in the last decade.
Our mapping work had two dimensions. The first captured advocacy documents where the main focus was on palliative care. The outcome of this study was published in 2016. We established a timeline of the production of the 34 palliative care declarations we identified, analysed the type of organisations they came from, and summarised their demands.
The second aspect focused on the mapping of 62 declarations that focused on euthanasia and assisted dying. In addition to the analysis of timelines, the organisation and summary of demands, we also explored arguments for and against euthanasia/assisted dying presented in these documents and analysed their relationship with the types of organisation that produced them. This study was published in 2017.
In both articles, we listed all the declarations included in the study, with links to their publication source, thus providing a compiled database of declarations on end of life issues grouped into two – ‘palliative care’ and ‘euthanasia/assisted dying’ declarations. They have proved useful points of reference.
From the ‘mapping’ dimension we wanted to proceed to a deeper analysis of these documents that seem so important to activists in the end of life field. Even as we pressed on, the number of declarations kept increasing. By the time we got to this stage we were looking at 104 declarations in total. More have appeared since we completed our analysis.
From the beginning of my journey with declarations, I have been curious to understand the effect the advocacy documents create. Content analysis of all identified declarations offered several possibilities, one of which pointed in the direction of the representations declarations make of palliative care and euthanasia/assisted dying. In this third paper we have therefore examined what representations are made of palliative care and euthanasia/assisted dying, along three dimensions: ‘framing’, ‘claiming’ and ‘demanding’.
I have been particularly encouraged by enthusiastic engagement from many end of life care researchers and practitioners from around the world. When I began working on this piece of research, I wrote a blog outlining the proposed study, listing the 23 declarations we had found at that point and requesting readers to notify us if they are aware of any other. Wider engagement and interest grew as I presented early findings of this stream of work at international palliative care conferences. Several declarations were brought to our attention as a result and, no doubt, questions and discussions that arose in meetings and conversations helped shape the process of our exploration. A big thank you to all who contributed. I am especially grateful to my co-authors Prof David Clark and Dr Jose Carrasco.
We have not only broken new ground with our research into declarations but also have created a substantial body of literature and a useful database. With advocacy continuing to gain significance in palliative care and end of life issues, I am confident the research interest in this area will also grow and inform the crafting, publication and promotion of declarations in the future.