Palliative care declarations: mapping a new form of intervention

Categories: Research.

When we started our study of palliative care declarations little did I know that this apparently small-scale desk-based study would unfold into an exciting expedition, offering opportunities far beyond its original scope.

Well over a year ago, in May 2015, I wrote a blog outlining our plan for studying palliative care declarations listing the declarations identified till then and inviting information about others. I am grateful to those who contacted us and added entries to our list of declarations.

My co-authors Dr Shahaduz Zaman, Dr Sandy Whitelaw, Professor David Clark and I are all very pleased that the study is now published as Palliative care declarations: mapping a new form of intervention, an open access letter to the editor in the Journal of Pain and Symptom Management.

This is the first publication to come out of our Global Interventions at the End of Life project. The project, and the open access to this letter, are funded by the Wellcome Trust.

Palliative care declarations: mapping a new form of intervention is a descriptive study of palliative care declarations. It gathers the declarations together, we believe for the first time. It presents how the practice of issuing declarations has grown over time, which are the organisations that actively engage in this form of advocacy, and what key issues they present. The lengthy table showing the full list of palliative care declarations is a useful resource in many ways.

As our research into palliative care declarations was developing it soon caught our attention that there are other declarations relevant to end of life issues. We explored several related areas and identified declarations on euthanasia or assisted dying exist in significant numbers.

Guess how many euthanasia/assisted dying declarations are published so far? Watch this space… we are fine-tuning the manuscript and we hope this work will get published too. In the meantime, if you know of any such declarations please do comment below or send me an email.

These two sets of declarations will lead us on to a more conceptual study in which we consider these declarations as a ‘lens’ through which to explore how the field of end of life is emerging around the globe.

The contents of these three documents will illuminate the first question of our Global Interventions at the End of Life project, which asks:

“how has the field of end of life care emerged in the modern global context, what factors have shaped its development, to what extent is it achieving its goals and what are the barriers to progress?”

When I presented our study on palliative care declarations at the 9th World Research Congress – European Association for Palliative Care at Dublin in June 2016, there was a lot of interest in the study, particularly in the question we are asking, ‘what do we know about the impact of these declarations?’.

This is precisely the question that started us off in this journey, which began with mapping the declarations which have been published so far.

Assessing the impact of each of these declarations could be demanding and outwith the capacity of our resources. However, there is a plan to study one of them in much more detail. Enter Dr Jose Miguel Carrasco Gimeno!

Jose Miguel is a sociologist with a background in public health. He is engaged in palliative care research with the ATLANTES research project, within the Institute of Cultural Studies (ICS) at the University of Navarra, Spain.

Jose Miguel (Josemi) has joined us on the University of Glasgow’s Dumfries Campus for a year, under the Jose Castillejo mobility programme for young researchers. His work with us is jointly funded by the ICS and the Spanish ministry of education, culture and sports.

Josemi has chosen to examine the 2014 WHA Resolution on palliative care, Strengthening of palliative care as a component of comprehensive care throughout the life course. This resolution came out of the 67th World Health Assembly (WHA), which took place in Geneva in 2014. This is one of the most important recent declarations in the palliative care world.

Jose Miguel’s study will look at the early impact of this 2014 WHA Resolution, its uptake and application.

I’m very excited that our project has its first publication, and am inspired by the opportunities this seemingly modest start is offering us, allowing us to engage with and explore end of life issues in the international context.

This article was originally published on the End of Life Studies blog. It is republished with permission. Follow the End of Life Studies blog on Facebook or Twitter.

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