What do you mean by ‘declarations’? This was the question I was asked most frequently as I stood beside our research poster at a recent conference.
EAPC 2017, the 15th World Congress of the European Association for Palliative Care took place in Madrid, Spain. The poster* presented ‘the representation of palliative care in assisted dying and euthanasia declarations’.
My colleagues Shahaduz Zaman, Sandy Whitelaw, David Clark and I published a paper Declarations on euthanasia and assisted dying in Death Studies in April 2017. It is the second paper to come out of our continuing research into ‘declarations’ on end of life issues.
Earlier, we compiled, mapped and analysed palliative care declarations to demonstrate the increasing significance of declarations as a form of advocacy interventions. This research was published as Palliative care declarations: mapping a new form of intervention in the Journal of Pain and Symptom Management in 2016.
In our publications, my colleagues and I have defined these declarations as ‘formal statements issued by associations, organisations and groups’…. These declarations group around a common purpose, which is to ‘capture the goals of interest groups, make statements of intent, point to a more desirable state of affairs, and encourage greater awareness to achieve a stated goal.’
Two years into this work, and declarations keep on appearing. A few more have been issued since the data collection period of our published studies.
And sure enough, there was yet another declaration at the 2017 EAPC congress; this time identifying a new area for advocacy in palliative care landscape – ‘volunteering’:‘The EAPC Madrid Charter on Volunteering in Hospice and Palliative Care’. This charter recognises the contributions of millions of volunteers to palliative care around the world and to encourage substantial increase of volunteerism in the light of the emerging community palliative care paradigm.
While doing research into palliative care declarations, it occurred to me that there is a significant body of declarations pertaining to the area of euthanasia and assisted dying. This prompted further research into declarations relating to this issue, an area which has been a subject of fierce discussions in several countries in recent years.
I’m very pleased that our mapping study of declarations on euthanasia and assisted dying is now published in Death Studies, and is available free, online and open access.
Just like the palliative care declarations paper, this new article presents a list of euthanasia and assisted dying declarations, creating a timeline and mapping the organisations involved and their geographical scope.
In addition, we have classified the types of organisations which have issued declarations, and have presented their viewpoints as represented through these declarations.
The table of 62 euthanasia and assisted dying declarations lists all identified declarations along with important details, including the summary of their demands and key messages, and links to the source pages of these declarations where they are available online.
My colleagues and I are very pleased to have broken new ground for research into advocacy interventions at the end of life through these two mapping studies on palliative care declarations and euthanasia and assisted dying declarations.
More research is, of course, planned. We will explore the contents of declarations in more detail and assess the impact of a selected declaration. We hope this strand of our work will contribute to better understanding of this form of advocacy, which seems to be attracting increasing amounts of time, dedication and effort.
So now I’ll return to the question at the beginning of this post.
At first I was a bit surprised to be asked the question, ‘what do you mean by ‘declarations’?’ at a conference which over the past several years has seen the launch of a significant number of declarations.
I am convinced that the question does not arise from a lack of awareness of what declarations are. Is it perhaps that declarations do not seem an obvious subject for academic research? Or could it be that we have, by using academic shorthand in the title of our papers and posters, accidentally made the subject opaque?
Whatever the reason behind the question, there is no doubt that declarations occupy a significant space of the world of palliative and end of life care. Despite this prominence, however, declarations haven’t previously come under the scrutiny of academic researchers.
I believe that by continuing our research into declarations we will significantly contribute to advocacy interventions in the future by offering research-informed approaches to advocates of end of life care.
Hamilton Inbadas
*For those not immersed in the academic world, a poster is a brief summary of a piece of research in text, graphs and pictures, designed to summarise information and to generate publicity and discussion.