Declarations as advocacy
We are investigating the role of declarations as advocacy in palliative care, assisted dying, older people and pain management.
This work is being carried out as part of Global Interventions at the End of Life, our Wellcome Trust funded research project.
More about our study of palliative care declarations
Issuing declarations has grown in importance as an advocacy intervention in palliative care and can take several forms. In recent decades we observe palliative care associations, organisations and groups issuing 'declarations' to influence policy, raise awareness and call others to action.
These declaration documents may reveal which issues are most prominent in the palliative care field at the time of their release.
Despite their increasing occurrence and prominence, palliative care declarations have attracted little attention from researchers.
- to map the emergence of the practice of palliative care declarations in the international context
- to capture their form and characteristics
- to assess their purpose
Palliative care declarations were collected using a four-stage strategy:
- search on the internet
- search on the websites of relevant organisations
- social media appeal through a post on the End of Life Studies blog
- following selected posts from social media
Content analysis was undertaken to examine formats, issues and goals.
We identified 34 palliative care declarations (1983 to February 2016).
These declarations varied in geographical scope: global (17), international (9), national (6) and regional (2).
Formats included: lists of recommendations, affirmations of convictions, statements of 'commitments', charters, manifestos, proclamations, challenges and resolutions.
Key topics included: palliative care education, policy change, access to palliative care, essential drugs and opioid availability, pain relief, research, public awareness and human rights.
Declarations are one way to understand the global development of palliative care. In most cases however there is little evidence of follow up or impact assessment of palliative care 'declarations'.
We are now working on follow-up studies looking at declarations as advocacy in assisted dying, for older people, and in pain management.
Inbadas, H. , Zaman, S., Whitelaw, A. and Clark, D. (2016) Palliative care declarations: mapping a new form of intervention. Journal of Pain and Symptom Management, 52(3), e7-e15. (doi: 10.1016/j.jpainsymman.2016.05.009) (PMID:27401509) (PMCID:PMC5026679)
Inbadas, H. , Zaman, S., Whitelaw, S. and Clark, D. (2017) Declarations on euthanasia and assisted dying. Death Studies, 41(9), pp. 574-584. (doi: 10.1080/07481187.2017.1317300) (PMID:28398131) (PMCID:PMC5951142)
Inbadas, H. , Zaman, S., Whitelaw, A. and Clark, D. (2017) Representation of 'Palliative Care' in Assisted Dying/Euthanasia Declarations. 15th World Congress of the European Association for Palliative Care, Madrid, Spain, 18 - 20 May 2017.