Medicine, Health Care and Philosophy 24 (4):507-516 (2021)

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.
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DOI 10.1007/s11019-021-10022-7
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References found in this work BETA

Evidence-Based Policymaking: A Critique.Trisha Greenhalgh & Jill Russell - 2009 - Perspectives in Biology and Medicine 52 (2):304-318.
Suffering and Dying Well: On the Proper Aim of Palliative Care.Govert den Hartogh - 2017 - Medicine, Health Care and Philosophy 20 (3):413-424.
Death Without Distress? The Taboo of Suffering in Palliative Care.Nina Streeck - 2020 - Medicine, Health Care and Philosophy 23 (3):343-351.

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