Mainstreaming palliative care: Rhetoric or reality

A qualitative investigation of the perceptions of key palliative care stakeholders in relation to the ‘mainstreaming’ of hospice/palliative care.

The core of this thesis is an exploration of issues associated with hospice/palliative care's integration into mainstream health settings. This trend, which has been formally incorporated into health care policy in recent years has generated widespread debate. Hanson (1998, 1999) - a key contributor to the mainstreaming debate in Australia - notes that this debate, which has consisted largely of academic discussion, must move beyond discussion and supposition to a comprehensive analysis of the intended and unintended consequences of mainstreaming. Hanson expands on this suggestion by contending that 'rigorous and appropriately focused research' must constitute an essential component of such an analysis, and the apparent lack of such research provided a strong rationale for this study. Accordingly, the major focus of this qualitative study was an investigation of the perceptions of 32 key stakeholders in palliative care in relation to the mainstreaming of hospice/palliative care service delivery, as it was felt that a systematic investigation of the perceptions of such a group could provide accurate insights into whether this process is proceeding in a manner that will provide the best outcomes for all concerned.

Data was collected via 32 semi-structured interviews, and a Weberian analysis of the notions of charisma, routinisation and bureaucracy was used to frame the study, and to inform the interpretation of the study's findings. While Weber's notion of the 'routinisation of charisma' was rejected as a suitable framework for explaining and understanding ongoing developments in hospice/palliative care, his views on bureaucracy and the rationalisation of modern society were found to provide more useful insights into recent developments in palliative care service provision and the perspectives of participants in the study.

Findings from this study reflected the participants' view that successful mainstreaming - and by implication the development of a model for effective palliative care service delivery - is underpinned by a foundation of 'pre-mainstreaming processes', which are, in turn, influenced by a range of 'pre-mainstreaming issues'. These 'pre-cursors' to successful mainstreaming were viewed as essential forerunners to a model for 'best practice', while a range of actual and potential benefits was seen as the most important outcome of mainstreaming. Despite these more positive findings, analysis of data revealed the strong perception that mainstreaming has generated significantly more problems and difficulties than benefits, and that the rhetoric that has accompanied and driven palliative care's integration into the mainstream is not matched by reality in service provision.

The expression of this view by 32 key stakeholders in the field of palliative care represents an important message to those overseeing palliative care's integration into mainstream services, and it is essential that these concerns are acknowledged and addressed as hospice's integration into the mainstream continues. Significantly, participants also indicated that the implementation of a range of 'mainstreaming strategies' might facilitate the effective and successful mainstreaming of hospice/palliative care services, with educational strategies identified as the most effective method of facilitating the mainstreaming process. The participants' strong focus on educational strategies represents a potential basis for future research directions, and for recommendations to those charged with the responsibility of overseeing hospice/palliative care's reintegration into the mainstream of health care.