Extending specialist palliative care to people with heart failure: Semantic, historical and practical limitations to policy guidelines

Abstract

This paper explores the continuities and discontinuities in recent policy on the extension of palliative care to people with heart failure in the UK. It focuses on how professionals in cardiology and specialist palliative care negotiate their disciplinary boundaries within the context of these policy moves. It draws out the semantic, historical and practical tensions between the core values of cardiology, with its focus on 'living with heart failure', and specialist palliative medicine, with its focus on 'dying with heart failure'. A focus on negotiation of interdisciplinary boundaries reveals different engagements with notions of dying and palliation rather than simply different disease trajectories. Further, uncertainty about prognosis and the probability of sudden death pose a challenge to two core principles of specialist palliative care: 'open awareness' and 'good death'. We are not suggesting that these differences are insurmountable. Rather, in highlighting these tensions, our aim is to problematise the relationship between policy and practice, as being mediated by negotiations of disciplinary values (culture) within a local context. We conclude by recommending a wider discussion on notions of 'open awareness' and how professionals within different medical disciplines engage with alternate ways of dealing with uncertainty and sudden death as part of human condition. The arguments presented here are based on data and analysis from a larger qualitative study conducted during 2004-2005 in north and central England.