Images of hospices on social media: The #notdingy campaign

In June 2015, hospices were described as ‘dingy’ on two popular British television dramas. This spurred a social media protest using the hashtag #notdingy. Images were a central component of the #notdingy campaign, which asserted that hospices are positive places in which to be cared for, in many cases until death. In this essay I analyse both the formal qualities of these images as well as their encoded meanings and symbolism (Pauly 2005). I argue that the value of these kinds of images lies less in what is actually depicted than in the images’ affective or emotional force, which can absorb particular meanings and symbolism in the context of a social media campaign

Social death in end-of-life care policy

Social death denotes a loss of personhood. The concept of social death is engaged with in English end-of-life care policy that sees social death before physical death as a problem. Policy-makers posit that dying persons are likely to be subject to a social death prior to their physical death unless they play an active and aware role in planning their death, facilitated through communication and access to services. Such a view foregrounds a vision of agency and does not address Sudnow's critique of how care of the dying focuses on the body

What’s in a name? From pathways to plans in end of life care

It is not surprising that the independent reviewers of the Liverpool care pathway suggested removing the term “pathway” from discussions about end of life care. Language influences the way people perceive the world and shapes the way we live

Planning for death? An ethnographic study of choice and English end-of-life care

In 2008 the National End of Life Care Strategy was released in England to create a largescale change in the way dying patients were cared for. This dissertation explores the meaning, practice, and experiences of end-of-life care (EOLC). It is based on ethnographic fieldwork from 2010-2012 that follows policy into and across healthcare practice and the daily lives of those living with life-limiting conditions. The first part of the study analyses the discourse of policy as evident in documents, policy events, and interviews with policy-makers, to understand the core values and motivations within this new field. By emphasising patient choice through advance care planning as a way to facilitate a ‘good death’, these polices have reshaped how persons, as dying patients, could be known and how they are positioned within the healthcare system as autonomous, reflective individuals. Documents like the Preferred Priorities for Care are used to facilitate this process. As observed during clinical visits and expressed in interviews, healthcare professionals selectively use such forms, thereby demonstrating varying professional values, and treat their completion as a task. The layout and use of the forms influences professional-patient interaction and the ‘choices’ that can be made. The second half of the dissertation focuses on the experiences of those who are the subject of EOLC policy and is based on long-term interaction with 10 people (up to 14 months), often in their own homes and involving their daily routines and family; this is supplemented by an additional 43 in-depth interviews and observations of support groups. Being embedded in a social web of relations was a prominent feature of our encounters. Maintaining familial relationships and roles is important to people and they do this by navigating the flow of care and concern within the family. Assumptions about the linear trajectory of dying and the finitude of death are challenged by people’s experiences of prolonged waiting and incomplete endings as they continued to be entangled in social relationships. Consequently a wider notion of personhood beyond individual patienthood should be adopted for understanding living at the ‘end of life’. Shifting the focus from choice as an individual act and object to one of interaction, I demonstrate how a relational approach to the study of end-of-life care challenges the emphasis on the dying individual and the dichotomy between care and choice. Overall, this ethnography demonstrates the difference between how policy conceptualises end of life and choice and the way people, who may be in this category, experience living with life-limiting conditions

‘We come in as “the nothing”’

In our ethnographic study of palliative care in a UK medical setting, we concerned ourselves with instances when medical staff chose not do something, which we came to call ‘noninterventions’. Such instances raised an obvious question: how does one study something that is not happening? In this Position Piece, we outline three ways in which we have tried to engage with this methodological question, from the initial grant application process to the point we are at now: first, a somewhat positivist approach, which allowed us to delineate the phenomenon of our study; second, a following technique, adopted to understand noninterventions as and when they are conceived by our informants; and third, an approach that tries to trace enactments of ‘not doing’ by mapping the range of different practices and, in so doing, elucidates how ‘not doing’ invariably occurs alongside other forms of doing. We describe what these approaches have taught us so far and reflect on the limits of each. We do so in the hope of providing others with starting points for studying nothings, ‘not doings’, and absences

‘We come in as “the nothing”’: Researching non-intervention in palliative care

In our ethnographic study of palliative care in a UK medical setting, we concerned ourselves with instances when medical staff chose not do something, which we came to call ‘noninterventions’. Such instances raised an obvious question: how does one study something that is not happening? In this Position Piece, we outline three ways in which we have tried to engage with this methodological question, from the initial grant application process to the point we are at now: first, a somewhat positivist approach, which allowed us to delineate the phenomenon of our study; second, a following technique, adopted to understand noninterventions as and when they are conceived by our informants; and third, an approach that tries to trace enactments of ‘not doing’ by mapping the range of different practices and, in so doing, elucidates how ‘not doing’ invariably occurs alongside other forms of doing. We describe what these approaches have taught us so far and reflect on the limits of each. We do so in the hope of providing others with starting points for studying nothings, ‘not doings’, and absences

The Overlap Between Geriatric Medicine and Palliative Care: A Scoping Literature Review

With an increasing aging population worldwide, there is a growing need for both palliative care and geriatric medicine. It is presumed in medical literature that both specialties share similar goals about patient care and could collaborate. To inform future service development, the objective of this review was to identify what is currently empirically known about overlapping working practices. This article provides a scoping literature review on the relationship between geriatric medicine and palliative care within the United Kingdom. The review encompassed literature written between 1997 and 2019 accessed via Scopus, Web of Science, PubMed, and Google Scholar. Three themes were identified: (a) unclear boundaries between specialties, (b) communication within and between specialisms, and (c) ambiguity of how older people fit in the current health care system. We suggest that more empirical research is conducted about the overlap between palliative care and geriatric medicine to understand how interprofessional working and patient care can be improved

Constructing denial as a disease object: accounts by medical students meeting dying patients

As part of the general shift in contemporary healthcare from a focus on specific diseases to treating the whole person, doctors are now expected to be reflective and engage empathetically with patients. Yet, the context of end of life potentially confounds this commitment. Here we draw on the written submissions of UK medical students confronting dying patients to offer insight into a range of entangled issues. Although the exercise is designed to highlight the value of listening to patients and to encourage reflective practice, the experience of ultimately not being able to treat or cure frequently challenges the students’ understanding of the central purpose of clinical care and their future role as doctors. Because they invariably draw on the notion of ‘good death’, whenever they have to make sense of patient behaviour deemed as irrational or obstructive the students employ the concept of ‘denial’ as a strategic category. In this context denial is referred to as a disease-like object that the students feel they can, and should, diagnose and treat. Such conceptual operations consequently illustrate a tension arising from trying to acknowledge the value of a whole-patient approach while simultaneously reproducing the emphasis placed on identifying those discrete elements that determine legitimate medical intervention

Placing death and dying:the work of making place at the end of life

Background: Palliative care policy and professionals are concerned about the location of care, epitomised in phrases like ‘preferred place of care’ and ‘preferred place of death’. There has been an emphasis on home being the ideal place. Conversely, it is recognised that high quality palliative and end-of-life care can be delivered in a wide variety of settings. Methods: This presentation is part of the ongoing Forms of Care project about palliative care. Ethnographic methods include observation of over 60 in- and outpatient palliative care team meetings, 1 year of shadowing palliative care team members in their daily work, and 15 interviews with palliative care staff, including doctors, nurses, social workers, and physiotherapists. Three patients and their families were also interviewed multiple times. Data was thematically analysed, drawing on social theory. Results: Palliative care professionals consider place as part of the care they deliver. Hospital was typified as a place of control, known infrastructure, skilled staff and support, and constant monitoring. The home was a place of being a ‘guest’ and unknown quantity, creating a shift in power dynamics between professionals, and patients and their families. The drive for patients to be cared for at home came with added costs in terms of resources and the emotional labour. However, many cases extended beyond this binary. We highlight the work both professionals and patients do to keep a place stable. We suggest such efforts of ‘placing’ show how place is not merely a geographical location, but made through relations, interactions and activities. Conclusion: In the push to enable patients to die at home, what tends to be overlooked is the work that goes into ‘placing’: the work of ‘making place’. The research indicates the importance of understanding how placing gets done as a form of car

Learning to care: medical students' reported value and evaluation of palliative care teaching involving meeting patients and reflective writing.

BACKGROUND: Over recent years there has been an increase in teaching of both palliative care and reflective practice in UK medical schools. The palliative care teaching at the University of Cambridge School of Clinical Medicine is multi-faceted and involves students writing reflective essays after individually meeting patients approaching the end of life during their final year general practice and hospital medicine placements. This paper draws on two studies examining this teaching element to analyse what the students found valuable about it and to comment on the practice of meeting patients and subsequent reflective writing. METHODS: Two studies have explored students' perceptions of these course components. The first was a thematic analysis of 234 reflective essays from 123 students written in 2007-2008, including examining what students wrote about the exercise itself. The second project involved a semi-structured questionnaire that students completed anonymously; this paper reports on the free text elements of that study [sample size =107]. Since similar themes were found in both studies, the coding structures from each project were compared and combined, enabling triangulation of the findings around what the students found valuable from the palliative care teaching involving meeting patients and reflective writing. RESULTS: Overall, students reported that these components of the palliative care teaching are valuable. Four main themes were identified as aspects that students valued: (1) dedicated time with patients, (2) learning about wider elements of treatment and holistic care, (3) practicing communication skills, and (4) learning about themselves through reflective writing. Some students expressed a dislike for having to formally write a reflective essay. CONCLUSION: It is possible to arrange for all of the medical students to individually meet at least two patients receiving palliative or end of life care. Students found these encounters valuable and many wrote about the benefit of formally writing about these experiences. Students reported finding this model useful in widening their skill-set and understanding of palliative care