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Dying as an issue of public concern: cultural scripts on palliative care in Sweden
Linköping University, Department of Health, Medicine and Caring Sciences, Division of Society and Health. Linköping University, Faculty of Medicine and Health Sciences. Linköping University, Department of Culture and Society, Division of Ageing and Social Change. Linköping University, Faculty of Arts and Sciences.ORCID iD: 0000-0003-2891-646X
Linköping University, Department of Health, Medicine and Caring Sciences, Division of Society and Health. Linköping University, Faculty of Medicine and Health Sciences.ORCID iD: 0000-0003-0204-4536
Linköping University, Faculty of Arts and Sciences. Linköping University, Department of Culture and Society, Division of Ageing and Social Change.ORCID iD: 0000-0002-1443-5895
Linköping University, Department of Health, Medicine and Caring Sciences, Division of Society and Health. Linköping University, Faculty of Medicine and Health Sciences.
2021 (English)In: Medicine, Health care and Philosophy, ISSN 1386-7423, E-ISSN 1572-8633, Vol. 24, p. 507-516Article in journal (Refereed) Published
Abstract [en]

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 currentstate of palliative care. Departing from this aim, focus has been on identifying how personal experiences of ‘the self’ areintertwined with culturally available meta-level concepts and how experts contribute to construct new scripts on palliativecare. Twelve qualitative interviews were conducted. Four scripts were identifed 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 defnitions. The fndings of this studyillustrate how experts in complex ways intertwine experiences of ‘the self’ with meta-levels concepts in order to make senseof the feld of palliative care. The participants did not endorse one “right way” of “good” deaths. Instead, palliative care wasconsidered to be located in a complex state where the historical development, consisting of both desirable ideals, death denialsand lack of guidelines, and more recent developments of strives towards universal concepts, “improvement” and increasedbureaucracy altogether played a signifcant role for how palliative care has developed and is organised and conducted today.

Place, publisher, year, edition, pages
Springer, 2021. Vol. 24, p. 507-516
Keywords [en]
Palliative care; Cultural scripts; Policymaking; Qualitative interviews
National Category
Sociology (excluding Social Work, Social Psychology and Social Anthropology) Health Care Service and Management, Health Policy and Services and Health Economy
Identifiers
URN: urn:nbn:se:liu:diva-175540DOI: 10.1007/s11019-021-10022-7ISI: 000647922900001PubMedID: 33959886Scopus ID: 2-s2.0-85105742738OAI: oai:DiVA.org:liu-175540DiVA, id: diva2:1553048
Note

Funding: Linkoping University - FORTE-Swedish Research Council for Health, Working Life and Welfare [2017-01187]; Region Östergotland, Sweden

Available from: 2021-05-07 Created: 2021-05-07 Last updated: 2022-05-06Bibliographically approved
In thesis
1. Loneliness and Dying as Issues of Public Concern in Sweden
Open this publication in new window or tab >>Loneliness and Dying as Issues of Public Concern in Sweden
2020 (English)Doctoral thesis, comprehensive summary (Other academic)
Alternative title[sv]
Ensamhet och döende som samhällsfrågor i Sverige
Abstract [en]

Loneliness among older people and how the dying should be cared for are issues that evoke public debate. These issues are often described as universal and existential aspects of the human experience. Societal understandings of loneliness and dying have, however, changed dramatically over the past decades. Loneliness among older people and how we die are surrounded with ideals of how to "age well" and "good deaths", where failure to meet these expectations is associated with tabus, stigma and personal and societal failures. Consequently, studying loneliness among older people and care of the dying gives rise to the question of to what degree loneliness and dying are personal or public concerns. 

The aim of this dissertation is to study how loneliness among older people is constructed in the Swedish news press and how care of the dying is constructed in policies and through the perspectives of experts in palliative care. Specifically, the analysis explores to what extent these issues have become public concerns, and how "old and lonely" and "the dying" are positioned and constructed. 

In Paper I, the focus is on identifying overall discourses on loneliness among older people in the Swedish news press. Paper II is an analysis of how the responsibility for reducing loneliness is designated in the Swedish news press. Paper III explores how policies on palliative care have emerged and developed in Sweden over time since the 1970s up until today. Paper IV highlights the perspectives of experts, in palliative care, on the development and current state of palliative care, and the role of policymaking in this context. 

The findings of Paper I illustrate that although loneliness among older people have seemingly gained increased attention, much of the news articles are about the deficiencies in the organisation of eldercare and volunteer work with aims of reducing loneliness. In Paper II, the main finding is that the task of reducing loneliness is discussed, defined, and designated by and to those who were "non-old" and "non-lonely", where ambitions of inclusion result in constructing old people as the "others". Paper III shows how policies on palliative care have changed, from an emphasis on psychological end-of-life care and an overarching critique of the hospice care philosophy, to claims for care to be instead inspired by the very same philosophy. Furthermore, ideals of dying at home have lost their significance as palliative care should be universal and carried out everywhere. Based on interviews with experts in palliative care, the results of Paper IV highlight the complex development of palliative care in between deficiencies in end-of-life care of the past and improvements of the present. These improvements resulted, however, in risks of too much bureaucracy.

The overall findings of this dissertation indicate that loneliness among older people and care of the dying serve as symbols for criticising the idea of the development of "modern society", which is altogether viewed as individualistic, bureaucratised and medicalised. Throughout the studies included in this dissertation, the issues of individual autonomy and activity as well as responsibility have shown to be central. In the context of palliative care, the concept of autonomy has a key position and responsibility is on the dying person to make choices in order to achieve "good palliative care". Regarding loneliness among older people, emphasis is on how to make older people physically and socially active. Loneliness is constructed as a problem which should be avoided and solved by "society" bearing the responsibility for enabling older people not to be lonely. 

Abstract [sv]

Ensamhet bland äldre och vård av döende personer är frågor som diskuteras i offentliga fora. Dessa frågor beskrivs ofta som universella och en central del av människans existens. Dock har samhälleliga förståelser av ensamhet och döende förändrats dramatiskt under de senaste decennierna. Ensamhet bland äldre människor och hur vi dör är frågor som är omgärdade av ideal om "god död" och om att "åldras väl", där misslyckanden med att uppfylla dessa förväntningar är förknippade med tabun, stigma och personliga och samhälleliga brister. Eftersom äldres ensamhet och vård i livets slut är frågor som till viss del välfärdsstaten i Sverige engagerar sig i aktualiseras frågan om i vilken grad ensamhet och vård av döende personer är individens eller samhällets ansvar. Den ökade samhälleliga uppmärksamheten för dessa frågor i media och genom policyer, motiverar behovet av forskning om hur ensamhet bland äldre konstrueras, vad som ger upphov till att vissa definitioner blir förgivettagna och vilka typer av definitioner som nyhetspressen och policyer lutar sig emot. 

Syftet med denna avhandling är att studera hur ensamhet bland äldre konstrueras i svensk nyhetspress och vård av döende konstrueras i policyer samt utifrån experters perspektiv. En central del av detta syfte är att analysera i vilken utsträckning dessa frågor är individens respektive samhällets ansvar. Syftet är vidare att undersöka hur ”ensamma äldre” och ”döende personer” positioneras och konstrueras.

I Paper fokuserade jag på att identifiera övergripande diskurser om ensamhet bland äldre i den svenska nyhetspressen. Paper II utgjordes av en analys av hur ansvar för att minska ensamheten bland äldre utpekats i den svenska nyhetspressen. Hur policyer kring palliativ vård i Sverige först etablerades och har utvecklats över tid, mellan åren 1974-2018, studerades i Paper III. Experters perspektiv på utvecklingen och det nuvarande tillståndet för palliativ vård och vilken roll policyer haft i denna typ av vård belystes i Paper IV.

Trots att ensamhet bland äldre till synes har fått ökad uppmärksamhet i media, visade resultaten i Paper I att nyhetsartiklarna till stor del handlade om bristerna i organiseringen av äldreomsorg och betydelsen av volontärarbete för att minska ensamheten. I Paper II var den övergripande slutsatsen att uppdraget att minska ensamheten diskuterades, definierades och utpekades av och till dem som var "icke-äldre" och "icke-ensamma", där ambitioner om inkludering resulterade i att konstruera äldre människor som de "andra”. I Paper III var ett centralt fynd att policyer kring palliativ vård förändrats från betoning på psykologisk vård i livets slut och en övergripande kritik av vårdfilosofin från hospicerörelsen till krav på att vården bör utgå från denna filosofi. Dessutom tappade idealen om att dö hemma sin betydelse eftersom policyer med tiden betonade vikten av att palliativ vård ska vara universell och kunna genomföras överallt. Baserat på intervjuer med experter inom palliativ vård var resultaten av Paper IV att den historiska utvecklingen av hospice-rörelsen och samtida internationella händelser inom palliativ vård fungerade som referenspunkter för att förstå utvecklingen och det nuvarande tillståndet för den palliativa vården. Dessa metaberättelser sammanflätades också med personliga erfarenheter från palliativ vård.

De övergripande resultaten i denna doktorsavhandling var att ensamhet bland äldre och vård av döende tjänade som symboler för att kritisera utvecklingen av det ”moderna samhället” som betraktades som individualistiskt, byråkratiserat och medikaliserat. 

I de studier som ingår i denna doktorsavhandling var frågor om ansvar, individuell autonomi och aktivitet centrala. I policyer för palliativ vård var begreppet autonomi centralt och döende personer framställdes som ansvariga för att göra val för att uppnå ”god palliativ vård”. Beträffande ensamhet bland äldre låg tonvikten på att göra äldre fysiskt och socialt aktiva. Ensamhet bland äldre människor ansågs mestadels som ett problem som bör undvikas och lösas. Det var också ”samhället” som skulle göra det möjligt för äldre att inte uppleva ensamhet.

Place, publisher, year, edition, pages
Linköping: Linköping University Electronic Press, 2020. p. 68
Series
Linköping University Medical Dissertations, ISSN 0345-0082 ; 1765
Keywords
Loneliness, older people, news press, palliative care, policies, cultural scripts, social constructionism
National Category
Other Social Sciences not elsewhere specified
Identifiers
urn:nbn:se:liu:diva-171992 (URN)10.3384/diss.diva-171992 (DOI)9789179297435 (ISBN)
Public defence
2021-01-29, Online through Zoom (contact camilla.rosen@liu.se), 13:00 (Swedish)
Opponent
Supervisors
Available from: 2020-12-21 Created: 2020-12-16 Last updated: 2024-02-14Bibliographically approved

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Ågren, AxelNedlund, Ann-CharlotteCedersund, ElisabetKrevers, Barbro

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