User involvement and palliative care
Rhetoric or reality?
User involvement in health services research and development has been almost universally adopted as a 'good thing'. In the UK, the Department of Health, for example, has underlined their commitment to involving users in this way by appointing a Director of Patient Experience and Public Involvement (Department of Health 2002). Furthermore, demonstrating how users will be involved in the research process is increasingly necessary to secure research funding.1 The drive to promote user involvement has now reached palliative care services, with the National Council for Hospice and Specialist Palliative Care Services arguing that user involvement 'can enrich the principles and practices of palliative care' (NCHSPCS 2000: 1). Indeed, on the face of it, palliative care appears to have much to be gained from an approach that purports to place those with direct experience of using health services at the centre of priority setting and shaping practice. Moreover, user involvement appears to be consistent with the tenets of modern palliative care, evolving as they have done from a movement that grew by listening to provide a voice for the voiceless (Saunders, quoted by Oliviere 1999).
The rhetoric of user involvement is certainly persuasive. As Harrison and Mort (1998) acknowledge, 'being in favour of … more user involvement is rather like being against sin; at a rhetorical level, it is hard to find disagreement' (p. 66). However, problems arise when translating the rhetoric of user involvement into reality. Indeed, although an agenda of user involvement in UK health service development has been espoused for over a decade, progress in implementing this policy 'has been patchy' (Rhodes and Nocon 1998). Similarly, user involvement 'in NHS research is not fiction, but it appears to be at an early stage of implementation, with few researchers confident about carrying it out' (Telford et al. 2002: 97). Making the jump from rhetoric to reality poses particular challenges within palliative care, where the users whose involvement is sought may be especially vulnerable. If user involvement is to become a feature of palliative care research and service development, there is a need to address the specific context of palliative