Palliative Care Declarations: Mapping a New Form of Intervention

To the Editor: It is 21 years since the JPSM published the Declaration of Florian opolis, drawing attention to the need for improved access to pain and palliative care services in Latin America. In the intervening years, there has been a growing tendency for palliative care associations and organizations to issue formal public statements of this type. Declarations have become part of the international palliative care landscape. They appear to require significant orchestration and planning, and yet they have not been examined from a research perspective. Defined as ‘‘statement(s) of intent or summaries of the desirable situation to which participants intend to work and to which they would like to encourage others to work,’’ declarations highlight matters of particular concern or call others to action in some way. They are a window on the priorities emerging in the field. Understanding why, how, and with what effect declarations are produced has the potential to inform those who develop them and to improve their formulation and impact in the future. Our exploratory study set out to 1) map the emergence of the practice of palliative and end-of-life care declarations in the international context, 2) capture their form and characteristics, and 3) assess what is known about their purpose. To achieve this, we built a comprehensive collection and timeline of declarations that relate to palliative and end-of-life care, and are available in the public domain.

It is 21 years since the JPSM published the Declaration of Florian opolis, drawing attention to the need for improved access to pain and palliative care services in Latin America. 1 In the intervening years, there has been a growing tendency for palliative care associations and organizations to issue formal public statements of this type. Declarations have become part of the international palliative care landscape. They appear to require significant orchestration and planning, and yet they have not been examined from a research perspective. Defined as ''statement(s) of intent or summaries of the desirable situation to which participants intend to work and to which they would like to encourage others to work,'' 2 declarations highlight matters of particular concern or call others to action in some way. They are a window on the priorities emerging in the field.
Understanding why, how, and with what effect declarations are produced has the potential to inform those who develop them and to improve their formulation and impact in the future. Our exploratory study set out to 1) map the emergence of the practice of palliative and end-of-life care declarations in the international context, 2) capture their form and characteristics, and 3) assess what is known about their purpose. To achieve this, we built a comprehensive collection and timeline of declarations that relate to palliative and end-of-life care, and are available in the public domain.

Methods
Palliative and end-of-life care declarations published in the English language were collected using a fourstage approach. Our method was systematic but inevitably had some ad hoc elements, given the undocumented terrain we were investigating. Systematic searches on the Internet using the key words: palliative care, end-of-life care, declaration, manifesto, charter, commitment, and proclamation yielded 22 declarations. Web site scrutiny, especially the advocacy pages, of palliative care associations and organizations yielded seven declarations. A social media appeal through a blog post (by H.I.) listing the examples already found and requesting details of others was made, yielding one declaration. Finally, monitoring of social media from March 2015 to February 2016 led to the identification of four more declarations.
A timeline of palliative and end-of-life care declarations was created, and content analysis was undertaken to identify the geographical scope, relevant organizations, format of the documents, and key issues addressed.

Results Timeline
Thirty-four palliative care declarations were identified in the period 1983 to February 2016 ( Table 1). The timeline suggests a progressive increase in the production of declarations with 16 declarations published in the five-year period 2011 to 2015.

Geographical Scope
The declarations were found to differ in their intended geographical reach. Seventeen were global in ambition. Nine declarations were international in focus but restricted to a particular world region or set of countries (two each for Latin America, Europe, and the developing countries and one each for Eastern Europe, Sub-Saharan Africa, and selected countries from Europe). Of the six declarations with To include palliative medicine in clinical teaching programmes of undergraduates and in oncology modules and continuing education programmes To explore the potential for developing a Chinese service provision model for cancer rehabilitation and palliative therapy All oncology departments to supply at least two types of opioids and to draw up a list of basic drugs used in palliative care

Key Organizations
Palliative care associations dominate the production of the declarations, followed by associations from other fields of medicine, human rights organizations, academic institutions, and charitable organizations. The International Association of Hospice and Palliative Care, Most organizations and associations publishing palliative care declarations are based in Europe. India and China are the only Asian countries that had organizations involved in palliative care declarations. In addition to issuing their own declarations, palliative care associations from Canada also were found to be engaging in local collaborations in issuing declarations of partnership. The U.S. was notably absent from the production of palliative declarations, being represented only through the engagement of the two global human rights organizations, which are U.S. based.

Formats
The documents take different formats, revealing their varied purposes. Some set out ''recommendations'' about palliative care services, education, training provision, or policy changes. Others enshrine a clear ''call to action'' where the target audience can be government or the palliative care community itself. Some detail ''statements of convictions'' from the representing organizations, some outline specific ''action plans'' that the associations and their members seek to undertake, some harness the commitment of the producing organizations, and some draw attention to specific topics through a ''description of issues'' relevant to palliative care. Many declarations contain more than one of these formats.

Key Issues
Content analysis of the 34 declarations showed that most draw attention to more than one issue. The need for ''palliative care education'' was highlighted most frequently, followed by demands for policy change, advocacy for better palliative care provision, and the need for pain relief. Considering the entries for pain relief, drug availability, and opioid availability as a single group, the demand for pain relief and symptom control is the concern most often raised in the declarations. Other issues highlighted are the need for palliative care research, building public awareness, the recognition of palliative care as a human right, and the benefits of a multidisciplinary approach to palliative care. Some call attention to children's palliative care.

Comment
The practice of producing palliative care declarations has become a significant feature of the field of palliative care over the past three decades. Yet very little commentary or analysis exists on the process of making and disseminating palliative care declarations. The Budapest Commitments, which have led to further publications, include updates on progress and have a dedicated Web page on the context, process of development, and progress (2007e2011). 4,5 More of this approach is needed to better understand the value of declarations. Some commentators also refer to declarations when representing the voice of the palliative care community and promoting palliative care as a human right. 6 The World Health Assembly Resolution of 2014 can arguably be considered the highest level advocacy document among all the declarations identified. However, only two of the seven declarations published after the World Health Assembly Resolution make reference to it or build on its recommendations.
Palliative care declarations seem to follow some wellestablished advocacy principles: starting with agenda setting, gathering relevant information, consideration of potential solutions, and preparation of recommendations for action or policy change. 7e9 Monitoring the impact and ongoing improvement of strategies is recommended as part of implementing palliative care advocacy. 2 Such assessment is lacking with regard to palliative care declarations. Further studies are needed to understand the process of their formation and their impact.
This exploratory study has led to the identification of the following research questions: 1) How and with what intentions are palliative care declarations developed? 2) What is the influence of palliative care declarations on the global development of palliative care? and 3) What measures are needed for an effective assessment of the impact of individual palliative care declarations? Addressing these research questions would enrich the understanding of the role of declarations as advocacy interventions in the global palliative care context.