Dying as an issue of public concern: cultural scripts on palliative care in Sweden

Abstract

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.

A call for theory‐inspired analysis in qualitative research: Ways to construct different truths in and about healthcare

“…The case consisted of an excerpt from a debate article written by a chief physician in anaesthesiology, published in the online newsletter Altinget.dk , 20 January 2022 (Mathiesen, 2022). The case was chosen due to its relevance to the ongoing debate on and research about death, dying and palliative care in healthcare and society (see e.g., Agren et al, 2021; Glasdam et al, 2020a). The text could be seen in the slipstream of discourses and research on the financial and personnel resources in the healthcare system (e.g., Zavras, 2022), the dignified end‐of‐life and death of older adults (e.g., Brodtkorb et al, 2017), as well as the division of tasks between healthcare sectors (e.g., Hinde et al, 2021).…”

Policy Narratives on Palliative Care in Sweden 1974–2018

“…It is, however, argued that this social movement has undergone shifts from opposing acute care of the dying and orthodox cancer care, to being incorporated in the very same field, and thereafter being subject to increased routinisation, bureaucratisation and medicalisation [ 12 ]. The expansion of palliative care to general healthcare has led to this type of care being located in the nexus between medical expertise, with a focus on technology and symptom relief, on the one hand, and holistic perspectives originating from the philosophies of the hospice movement on the other [ 2 , 10 ]. Voices have recently been raised, encouraging a broader public health perspective on palliative care, acknowledging the social contexts and communities of palliative care, and not solely focus on symptoms and health services [ 1 ].…”