Background

In most parts of the world and for an extended period the proponents of palliative care, on the one hand, and of euthanasia or assisted dying, on the other, have been locked in disagreement (Clark, 2016). The mid-twentieth century founders of the modern approach to hospice and palliative care were almost universally opposed to euthanasia on both moral and strategic grounds, and this stance has largely continued over time (Materstvedt et al., 2003). First, the palliative care protagonists argue that it is not the role of medicine to intervene in order to end life (Boudreau & Somerville, 2013, 2014). Second, and over time, they maintain that where comprehensive palliative care is available, then requests for an assisted death will be unlikely to occur or can be ameliorated (McCormack, Clifford, & Conroy, 2012). Palliative care activists continue to argue that the problems which lead to assisted dying requests or to calls for the legalisation of euthanasia can usually be dealt with in ways that do not require death to be hastened (Chambaere, Cohen, Bernheim, Vander Stichele, & Deliens, 2016; Radbruch et al., 2015). They promote an emphasis on quality of life in the face of advanced disease and reject the idea of dying on demand. At best they suggest that discussions on the legalisation of assisted dying should be postponed until the world is properly served by palliative care provision.

By contrast, the arguments in favour of assisted dying tend to be based on secular principles that often include a ‘rights’ element. First among these is autonomy, the principle of ‘self-authorship’ of one’s life, and of one’s death (Landry, Foreman, & Kekewich, 2015; Sjöstrand, Helgesson, Eriksson, & Juth, 2013). Second is the more neo-liberal connotation of ‘choice’ within the healthcare system, which should include not only treatment and care options but also the determination of when, how and where we die (Wilkinson, 2015). Beyond these two principles, supporters of assisted dying also argue pragmatically that palliative care cannot be effective in every case and is not a universal solution to all end of life care needs (Hendry et al., 2013; Quill, Back, & Block, 2016). Accordingly, they seek autonomy, choice and the right to end one’s life, and for this to be enshrined in law and codes of medical practice.

The debates arising from the two camps highlight key themes that continue to shape the end of life discourse internationally. The spectrum of issues demonstrates the views of individuals and organisations engaged in or concerned about the development of end of life care either in particular local regions or countries or at the global level. Such views are often expressed through advocacy documents or ‘declarations’, of various kinds, 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’ (Help the Hospices, 2005). We argue that such ‘advocacy interventions’ (Inbadas, Zaman, Whitelaw, & Clark, 2016) provide a lens through which we can capture some important elements in the global end of life discourse, and in particular the competing claims and standpoints of differing interest groups.

In two earlier studies, we mapped the emergence of these declarations (Inbadas et al., 2016; Inbadas, Zaman, Whitelaw, & Clark, 2017), showing their increasing incidence, their changing geographic scope, and their emerging importance at the end of life field. Here, we look in more detail at the content of the declarations and focus in particular on what they can tell us about palliative care and assisted dying and their dispositions towards one another. Our specific objectives are to explore within the declarations:

1. The descriptions of palliative care and euthanasia/assisted dying.

2. The varied claims and demands that are made.

3. The actions and responses that are sought.

4. The desired outcomes that are envisaged.

5. The relationships and comparisons that can be established between them.

Methods

During the period March 2015 to June 2017 we identified declarations on end of life issues by systematic enquiry on the Google search engine, using the following keywords: palliative care, end of life, euthanasia, assisted dying in combination with declaration, charter, manifesto, resolution and statement. Eighty declarations were identified by this method. Over the same period, searches on the websites of advocacy organisations on end of life issues yielded a further 25 declarations. Seven declarations were identified following social media leads, and through a blog post appeal, two more declarations were noted. Out of the 114 declarations thus identified, we then excluded 11 from the study since they did not contain the characteristics of advocacy documents, as described above. The remaining 104 declarations had been in published over an extended period, from 1974 to 2017, but most were generated in more recent times.

The 104 declarations included in the study were analysed followed the principles of thematic content analysis. This involves coding verbal or textual material with the specific aim of making inferences about the experiences of social groups or the characteristics of a phenomenon (Smith, 1992). The method involves analysing the dominant themes in a dataset identified through a frequency count analysis (Braun & Clarke, 2006; Penney, Snyder, Crooks, & Johnston, 2011; Vaismoradi, Turunen, & Bondas, 2013). Conforming to this approach, all declarations were reviewed to identify themes based on the frequency of their occurrence. We used NVivo for coding patterns and themes, identifying the frequency count of recurrent themes and establishing relationships between them. The analysis of data was monitored by an investigator triangulation process by two researchers (HI, J-M C) to assure quality and validity (Hlady-Rispal & Jouison-Laffitte, 2014).

The 104 declarations were grouped into three categories. Declarations with the primary purpose of promoting palliative care were classified as palliative care declarations (n = 36). Those with the primary purpose of advocating for or against acceptance of euthanasia/assisted dying were classified as euthanasia/assisted dying declarations (n = 62). There were six declarations that did not fit either of the two groups but advocated around the significant end of life issues such as ‘treatment of pain’, ‘access to morphine’ and ‘rights of the dying child’.

Framing, claiming and demanding

Our analysis revealed that the content of the declarations could be categorised into three dimensions: (1)framing relates to how palliative care and euthanasia/assisted dying are positioned within a body of discourse, their specific properties and attributes and how these relate to wider contextual factors; (2) claiming identifies the specific contributions of palliative care and euthanasia/assisted dying to end of life experience and the provision of care; and (3) demanding are those elements which seek specific actions from governments, organisations and the general public for the advancement of palliative care or euthanasia/assisted dying.

Out of the 104 declarations we identified, 81 (78%) were advocating for palliative care and/or explicitly opposed to euthanasia/assisted dying; 14 (13%) represented a neutral position on euthanasia or were without direct reference to palliative care or euthanasia/assisted dying; and only 9 (9%) declarations were in support of euthanasia and/or assisted dying. This has significant bearing therefore on the frequency counts and proportions of material and the arguments explored here.

Conclusions

We identified a substantial number of declarations on end of life issues. Within these we found techniques of framing, claiming and demanding to be in evidence. Each of these categories had specific sub-components.

‘Framing’ contained the use of definitions, conceptual assertions and statements of clarification. These gave specificity to the matters at hand and enabled them to be seen in a wider context. The language of definitions imparted authority, particularly when they came from or were endorsed by prestigious bodies or related to other larger scale declarations, such as those on human rights. The plurality of definitions in evidence, whether they related to palliative care or euthanasia and assisted dying betokens a measure of pluralism, if not significant confusion. Whilst for palliative care, the definition of the WHO was front and centre, no such globally endorsed definition of euthanasia was identified. Within and around the definitions came efforts to conceptualise specific end of life issues, not least the nature and character of palliative care, as well as the boundaries and practices of assisted dying. This, in turn, indicated some areas of overlap, where conceptual clarity was not always in evidence – for example, on issues like terminal sedation, the withholding and withdrawing of treatment, and the propensity of pain-relieving medications to hasten death. In the same ways, the ‘demands’ found in the declarations could overlap and were not always mutually exclusive between the major positions in support of palliative care and euthanasia/assisted dying. Proponents of the latter rarely questioned the value of the former.

The claims made about palliative care and euthanasia/assisted dying fell into competing categories – those that were broadly positive about the contributions made, and those that were negative. Most of the negative effects fell onto euthanasia and assisted dying, whilst palliative care was much more widely cited for its beneficial effects.

The demands made in the declarations had four elements: education, service development, policy change and resources. For palliative care, this had numerous elements from capacity building, to sustainability – focussed on education, training, service provision and the availability of essential medicines. For euthanasia and assisted dying, a one-dimensional demand tended to predominate – the introduction of frameworks to support legalisation.

Many declarations presented the view that there is no place for euthanasia/assisted dying within palliative care, though some revealed more nuanced approaches. Some saw euthanasia as an important component of the end of life care and argued that ‘excellent palliative care should not exclude the right to choose assisted dying’ (The World Federation of Right to Die Societies, 1998). Others suggested that assisted dying should be considered only after all available options have been explored within palliative care. Some viewed palliative care and assisted dying as opposed, some as potentially alongside each other. Some viewed assisted dying as an aspect of palliative care and others as something to be excluded from it.

We observed the notable absence of ‘family’ as a significant consideration in these advocacy documents. Caring for the family of the patient is often presented as part of the core activity of palliative care. It is claimed that the philosophy of palliative care considers family, along with the patient, as the basic unit of care. However, the end of life care declarations that we analysed revealed that the assertions and claims presented were predominantly constructed around the patient’s needs and concerns, and lacked representation of the family. We also observed that the claims and demands made in relation to euthanasia/assisted dying were founded on the individual person’s human right with little consideration to the family’s collective identity and loyalty. This could be regarded as a reflection of the Western worldview, from where many of these declarations originated. Yet, even those with global geographical scope do not capture the rights, responsibilities of family members and the consequences of euthanasia/assisted dying for them. Accordingly, they pay little attention to representing the values of the collective identity culture often found in countries of the global South.

We see in these declarations what has been referred to as the struggle over the production and mobilisation of meanings (Benford & Snow, 2000). It is an active and dynamic process commonly found in social movements. Within the declarations, we studied there were many examples where complex issues were simplified in ways that might help to galvanise support or alternatively, diminish opposition. The declarations were intended to inspire ideals and also to legitimate action. We have shown that such declarations have become an established part of the end of life landscape, yet they are curiously ignored by social researchers. Here we map and categorise the declarations according to content. Future research would be of value in two areas. First, it could evaluate the effectiveness of declarations in achieving the goals they seek. Second, it could focus on the sites of declaration production, the processes of their formation and the insights this can bring into the unfolding development of end of life care discourse.