In Sweden, palliative care has, over the past decades, been object to policies and guidelines with focus on how to achieve “good palliative care”. The aim of this study has been to analyse how experts make sense of the development and the current state of palliative care. Departing from this aim, focus has been on identifying how personal experiences of ‘the self’ are intertwined with culturally available meta-level concepts and how experts contribute to construct new scripts on palliative care. Twelve (...) qualitative interviews were conducted. Four scripts were identified after analysing the empirical material: 1. script of paths towards working within palliative care; 2. script of desirable and deterrent reference points; 3. script of tensions between improvement and bureaucracy; and 4. script of low status and uncertain definitions. The findings of this study illustrate how experts in complex ways intertwine experiences of ‘the self’ with meta-levels concepts in order to make sense of the field of palliative care. The participants did not endorse one “right way” of “good” deaths. Instead, palliative care was considered to be located in a complex state where the historical development, consisting of both desirable ideals, death denials and lack of guidelines, and more recent developments of strives towards universal concepts, “improvement” and increased bureaucracy altogether played a significant role for how palliative care has developed and is organised and conducted today. (shrink)

In Sweden, efforts to govern end-of-life care through policies have been ongoing since the 1970s. The aim of this study is to analyse how policy narratives on palliative care in Sweden have been formulated and have changed over time since the 1970s up to 2018. We have analysed 65 different policy-documents. After having analysed the empirical material, three policy episodes were identified. In Episode 1, focus was on the need for norms, standards and a psychological end-of-life care with the main (...) goal of solving the alleged deficiencies within end-of-life care in hospital settings. Episode 2 was characterised by an emphasis on prioritising end-of-life care and dying at home, and on the fact that the hospice care philosophy should serve as inspiration. In Episode 3, the need for a palliative care philosophy that transcended all palliative care and the importance of systematic follow-ups and indicators was endorsed. Furthermore, human value and freedom of choice were emphasised. In conclusion, the increase of policy-documents produced by the welfare-state illustrate that death and dying have become matters of public concern and responsibility. Furthermore, significant shifts in policy narratives display how notions of good palliative care change, which in turn may affect both the practice and the content of care at the end of life. (shrink)