Loneliness and Dying as Issues of Public Concern in Sweden

Abstract: 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.