Understanding grief and care at end of life

One of the nicest elements of editing Sociology of Health & Illness over the past 6 years has been witnessing the vast landscape of topics that submissions to the journal have covered. As we accept papers for publication, we sometimes see that a number of papers speak to a focused element of this landscape and we are able to put these together into a special section that brings readers' attention to how sociologists of health and illness throw light on a contemporary issue and showcase their academic contributions to the field. This special section brings together three papers that focus on the topic of death and dying: on grief, end-of-life care, and the voices that speak to these issues. As sociologists of health and illness, we often seek to position ourselves as analysts armed with objectivity and reason, investigating social issues at arm's length. However, at times we are forcefully reminded that the issues we write about affect us all, as individuals, teams, and communities. This is one such time, as we are writing this introduction in the same week that our brilliant friend, colleague, and SHI Journal editor Professor Catherine Will, has died aged 47. She will be greatly missed. The first paper in our special section (Smith, 2024) focuses on grief. It notes how grief, once solely held and expressed in community spaces, has become something that can now also be a diagnosable condition, often in relation to major depression or other diagnoses. Smith traces this medicalisation of grief through incremental, granular changes made by 'psy-disciplines' (i.e., psychology, psychiatry, and associate human sciences, Rose, 1998) in articles published between 1975 and 1995, showing how, even before grief's inclusion as a pathological condition in the DSM-5-TR (APA, 2021), the psy-disciplines worked to exercise an exclusive expertise over it. Smith uses a critical discourse analysis, incorporating grounded theory methods, to analyse networks of knowledge, language, and authority held by these disciplines. Smith's article is based on themes generated from small portions of scientific article texts focussing on grief, published in three respected peer-reviewed US psy-discipline journals. The three key themes summarise the changing priorities and understandings of grief over this time. First, grief was claimed and asserted as an object of psy-discipline expertise, becoming something that necessitated expert interventions to attain its resolution. Second, conceptualisations and methods used to approach grief became increasingly 'scientific', prioritising quantitative methods and devising complex, multidimensional measures. Third, definitions and meanings of grief were refined as 'normal' and 'pathological', in accordance with medical and neoliberal values. Through the article, Smith notes how these themes support, nuance, and move beyond established knowledge with regard to the medicalisation of grief, with important implications for how we understand grief and its medicalisation today. In contrast, the second paper by Forbat et al. (2024), focuses on the importance of patient and public involvement and engagement (PPIE) in conducting research into how palliative care models can be adapted for local community spaces. The authors, including both PPIE experts and academics, sought to evaluate their experiences of working collectively on an implementation science study focused on adapting an Australian model of palliative care for older adults in British care homes. The authors analysed interviews with research team members through a Foucauldian (Foucault, 1977) lens of power and knowledge, exploring how disciplinary power, epistemological dissonance, and other tensions might arise in conducting this type of research. They problematise the notion of fixed boundaries within palliative care research that demarcate lay and academic territories through language, discourse, and related disciplinary practices. They note the subtle, multi-layered, and shifting positions and practices drawn on in different domains of the research process by all team members. They show how complex identities and porous boundaries need to be enacted and valued, for example, through acknowledging academics with lived experience of end-of-life care, PPIE members with long research histories, and new experiences of palliative care and death occurring over the study period, to add nuance rather than categories to the identities and expertise displayed and drawn upon in this field of research. The final paper in this special section by Lewis et al. (2024), highlights the need to understand perspectives that lie behind professional ideals of individual autonomy in decision-making around end of life. It seeks to understand how family and other non-professional carers enact care in the context of voluntary assisted dying in Australia, and how legislative reform shapes their roles and practices in a new reality. The study is part of a larger mixed-method longitudinal project, involving a diverse group of parties both supportive of, and objecting to, voluntary assisted death. The article is based on analysis of in-depth interview data from 42 people who had cared for a person who had sought assisted dying, and draws on Thompson's (2005) concept of ontological choreography as a heuristic analytical device for explaining how voluntary assisted dying is relationally experienced and enacted. As the authors note, 'new cultural norms particular to assisted dying are likely to emerge that will mould the kinds of feelings and behaviours that are allowable or expected of carers' (p. 3). Lewis et al. especially draw our attention to the ambivalence and compromises carers make—relief and gratitude, but also stress and distress. They highlight the illusion of certainty that assisted dying provides, for example, through the moral quandary of deciding how best to spend very finite time with the person who has chosen to end their life, and the regret and conflict that can so easily arise at this time. Together, these three papers remind us that while death and dying are universal experiences, they are also particular and situated and that the practices and voices that surround them, including the research practices themselves, remain important topics for medical sociology. A few short years ago we reflected with Catherine on recent health issues that had affected all our families and that made us sometimes wish we didn't 'do' medical sociology, because the boundary between academic and personal life in this context can, at times, feel so porous. This is one such time. But we are grateful that Catherine was able to continue with her work until very shortly before her death. She has left our community much wiser through her intellectual contributions, and her legendary kindness is something we will not forget. Catherine has left some big academic shoes to fill, but we know our community will support those who walk in her footsteps. Rest in peace, dear friend, and thank you.