Small Steps, Big Vision: using multi-stage qualitative research to develop a grab-and-go guide to support utilisation of the Ambitions for Palliative and End of Life Care framework.

BACKGROUND: The Ambitions for Palliative and End of Life Care is a national framework for local action in England co-produced by over 30 partners; little research has been conducted on how the Framework is received and used. This study sought to examine and support how people understand, interpret, and implement the Framework. METHODS: A multi-stage qualitative methodology involving four stages of data collection: (1) case study interviews, (2) focus groups, (3) interactive workshops, and (4) Evidence Cafés. From initial interviews, ongoing thematic data analysis informed the design and focus of subsequent stages as part of a process of knowledge transfer. RESULTS: A practical resource to support service provision and development was produced; a grab-and-go guide called "Small Steps, Big Visions". It focuses on the eight foundations in the Ambitions Framework, with additional guidance on collaboration and partnership working, and sharing learning. Each foundation is presented with a 'what' (definition), 'ask' (prompt questions), and 'examples in action' (drawn from case studies). CONCLUSIONS: Research can contribute to policy implementation to advance palliative and end of life care. The engagement and input of those responsible for implementation is key.

Ambitions for palliative and end of life care: mapping examples of use of the framework across England.

BACKGROUND: Since 2015, the Ambitions for Palliative and End of Life Care: a national framework for local action has provided guidance for care within England and beyond. Relaunched in 2021, the Framework sets out six Ambitions which, collectively, provide a vision to improve how death, dying and bereavement are experienced and managed. However, to date, there has been no central evaluation of how the Framework and its Ambitions have been implemented within service development and provision. To address this evidence gap, we investigated understanding and use of the Framework. METHODS: An online questionnaire survey was conducted to identify where the Framework has been used; examples of how it has been used; which Ambitions are being addressed; which foundations are being used; understanding of the utility of the Framework; and understanding of the opportunities and challenges involved in its use. The survey was open between 30 November 2021-31 January 2022, promoted via email, social media, professional newsletter and snowball sampling. Survey responses were analysed both descriptively, using frequency and cross-tabulations, and exploratively, using content and thematic analysis. RESULTS: 45 respondents submitted data; 86% were from England. Findings indicate that the Framework is particularly relevant to service commissioning and development across wider palliative and end of life care, with most respondents reporting a focus on Ambition 1 (Each person is seen as an individual) and Ambition 3 (Maximising comfort and wellbeing). Ambition 6 (Each community is prepared to help) was least likely to be prioritised, despite people welcoming the focus on community in national guidance. Of the Framework foundations, 'Education and training' was seen as most necessary to develop and/or sustain reported services. The provision of a shared language and collaborative work across sectors and partners were also deemed important. However, there is some indication that the Framework must give more prioritisation to carer and/or bereavement support, have greater scope to enhance shared practice and mutual learning, and be more easily accessible to non-NHS partners. CONCLUSIONS: The survey generated valuable summary level evidence on uptake of the Framework across England, offering important insights into current and past work, the factors impacting on this work and the implications for future development of the Framework. Our findings suggest considerable positive potential of the Framework to generate local action as intended, although difficulties remain concerning the mechanisms and resources necessary to enact this action. They also offer a valuable steer for research to further understand the issues raised, as well as scope for additional policy and implementation activity.

How much information is 'reasonable'? A qualitative interview study of the prescribing practices of palliative care professionals.

BACKGROUND: Prescribing clinicians have to negotiate ambiguities around information provision and consent for medications on a daily basis, despite the availability of professional guidance. AIM: This study aims to explore some of the many factors prescribing clinicians in the United Kingdom take into account when deciding what information to give to patients about medication choices, and when. DESIGN: In depth face-to-face interviews, utilising both a hypothetical scenario and semi-structured prompts, were conducted in order to elicit extended reflections on how clinicians individually work through such dilemmas and make decisions. SETTING/PARTICIPANTS: Ten prescribing clinicians (doctors and nurses) from a large combined team of National Health Service (NHS) secondary and community palliative care providers in England. RESULTS: Palliative care staff regularly face choices about information provision in prescribing discussions, in particular when considering whether information might increase distress. Participants presented three overlapping framings that helped them assess the range of factors that could potentially be taken into account; (1) assessing the individual patient, (2) tailoring the provision of information and (3) jointly forming a plan. CONCLUSIONS: Information provision about medication choices and effects is a demanding, ongoing process, requiring nuanced judgements that constitute an unacknowledged yet significant aspect of clinical workload. Although current medical guidelines allow clinical discretion about information provision, this can leave individual clinicians feeling vulnerable. Further evolution of guidelines needs to establish a more sophisticated way to acknowledge professional and legal requirements, whilst also promoting professional autonomy and judgement.

Standardising care of the dying: An ethnographic analysis of the Liverpool Care Pathway in England and the Netherlands.

The Liverpool Care Pathway for the Dying Patient (LCP) was a prominent set of guidance in the late 2000s and early 2010s within palliative and end-of-life care. Developed in England to improve the care of dying patients, it was later adopted in 20 counties. After a public scandal, it was removed from practice in England but remains in other locations, including the Netherlands. Drawing on two sets of ethnographic data, from England and the Netherlands, we consider the ways in which the LCP was engaged with as a form of standardisation aimed at improving practice, how it was deployed in relation to other forms of knowledge, and the political and moral statements that are being made through the (selective) use of it. Looking into the use of the LCP shows that, while the LCP attempts to standardise some of the values associated with palliative care, there are significant differences between how these standardised values are then enacted in different institutional and national contexts and by different individual care professionals. We conclude that the LCP was used to impart moral values, establish protocols of care, and demonstrate professionalism, showing the multiplicity of the use of standards in healthcare practice.

'Saying goodbye' during the COVID-19 pandemic: A document analysis of online newspapers with implications for end of life care.

BACKGROUND: News media create a sense-making narrative, shaping, reflecting and enforcing cultural ideas and experiences. Reportage of COVID-related death and bereavement illuminates public perceptions of, and responses to, the COVID-19 pandemic. AIM: We aimed to explore British newspaper representations of 'saying goodbye' before and after a COVID-related death and consider clinical implications. DESIGN: Document analysis of UK online newspaper articles published during 2 week-long periods in March-April 2020. DATA SOURCES: The seven most-read online newspapers were searched: The Guardian, The Daily Mail, The Telegraph, The Mirror, The Sun, The Times and The Metro. Fifty-five articles discussed bereavement after a human death from COVID-19, published during 18/03-24/03/2020 (the UK's transition into lockdown) or 08/04-14/04/2020 (the UK peak of the pandemic's first wave). RESULTS: The act of 'saying goodbye' (before, during and after death) was central to media representations of COVID bereavement, represented as inherently important and profoundly disrupted. Bedside access was portrayed as restricted, variable and uncertain, with families begging or bargaining for contact. Video-link goodbyes were described with ambivalence. Patients were portrayed as 'dying alone' regardless of clinician presence. Funerals were portrayed as travesties and grieving alone as unnatural. Articles focused on what was forbidden and offered little practical guidance. CONCLUSION: Newspapers portrayed COVID-19 as disruptive to rituals of 'saying goodbye' before, during and after death. Adaptations were presented as insufficient attempts to ameliorate tragic situations. More nuanced and supportive reporting is recommended. Clinicians and other professionals supporting the bereaved can play an important role in offering alternative narratives.

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.

Applying social theory to understand health-related behaviours.

Health-related behaviours are a concern for contemporary health policy and practice given their association with a range of illness outcomes. Many of the policies and interventions aimed at changing health-related behaviours assume that people are more or less free to choose their behaviour and how they experience health. Within sociology and anthropology, these behaviours are viewed not as acts of choice but as actions and practices situated within a larger sociocultural context. In this paper, we outline three theoretical perspectives useful in understanding behaviours that may influence one's health in this wider context: theories of social practice, social networks and interactionism. We argue that by better understanding how health-related behaviours are performed in people's everyday lives, more suitable interventions and clinical management can be developed.

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.

The implications of COVID-19 on health and social care personnel in long-term care facilities for older people: An international scoping review.

This scoping review mapped out the existing literature pertaining to health and social care personnel experiences during the coronavirus disease-2019 (COVID-19) pandemic and their work in a long-term care setting for older people. This review identified the gaps in the implications of health and social care personnel's own health and well-being during the pandemic as well as the ethical dilemmas inherent in providing care during the COVID-19 pandemic. The authors utilised the PRISMA checklist for undertaking scoping reviews. The Databases Medline, PsychINFO, CINAHL, SCOPUS, Web of Science and Google Scholar were searched for relevant articles in English that were published between March 28, 2020 and June 1, 2022. This time period was selected to focus specifically on the COVID-19 pandemic. In the context of this review, long-term care facilities were defined to include institutions such as nursing homes, skilled nursing facilities, retirement homes and residential care homes. The gaps identified were a paucity of research on the experiences of health and social care personnel in long-term care facilities, the impact on their mental health, and the wider challenges experienced during the COVID-19 pandemic is discussed. The findings of this scoping review indicate a need for adequate preparedness during a pandemic within the health and social care sector to protect health and social care personnel and the individuals they care for.

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.

Placing death and dying: Making place at the end of life.

Over the last decade, policies in both the UK and many other countries have promoted the opportunity for patients at the end of life to be able to choose where to die. Central to this is the expectation that in most instances people would prefer to die at home, where they are more likely to feel most comfortable and less medicalised. In so doing, recording the preferred place of death and reducing the number of hospital deaths have become common measures of the overall quality of end of life care. We argue that as a consequence, what constitutes a desired or appropriate place is routinely defined in a very simple and static 'geographical' way, that is linked to conceptualising death as an unambiguous and discrete event that happens at a precise moment in time in a specific location. In contrast, we draw on 18 months of ethnographic fieldwork with two inner-London palliative care teams to describe the continual work staff do to make places suitable and appropriate for the processes of dying, rather than for a singular event. In this way, instead of 'place of death' merely defined in geographic terms, the palliative care staff attend to the much more dynamic relation between a patient and their location as they approach the end of their life. Central to this is an emphasis on dying as an open-ended process, and correspondingly place as a social space that reflects, and interacts with, living persons. We propose the term 'placing work' to capture these ongoing efforts as a patient's surroundings are continually altered and adjusted over time, and as a way to acknowledge this as a significant feature of the care given.

'It's like being in a war with an invisible enemy': A document analysis of bereavement due to COVID-19 in UK newspapers.

The COVID-19 pandemic has been followed intensely by the global news media, with deaths and bereavement a major focus. The media reflect and reinforce cultural conventions and sense-making, offering a lens which shapes personal experiences and attitudes. How COVID-19 bereavement is reported therefore has important societal implications. We aimed to explore the reportage and portrayal of COVID-19 related bereavement in the top seven most-read British online newspapers during two week-long periods in March and April 2020. We conducted a qualitative document analysis of all articles that described grief or bereavement after a death from COVID-19. Analysis of 55 articles was informed by critical discourse analysis and Terror Management Theory, which describes a psychological conflict arising between the realisation that death is inevitable and largely unpredictable and the human need for self-preservation. We identified three main narratives: (1) fear of an uncontrollable, unknown new virus and its uncertain consequences-associated with sensationalist language and a sense of helplessness and confusion; (2) managing uncertainty and fear via prediction of the future and calls for behaviour change, associated with use of war metaphors; and (3) mourning and loss narratives that paid respect to the deceased and gave voice to grief, associated with euphemistic or glorifying language ('passed away', 'heroes'). Accounts of death and grief were largely homogenous, with bereavement due to COVID-19 presented as a series of tragedies, and there was limited practical advice about what to do if a loved one became seriously ill or died. Reporting reflected the tension between focusing on existential threat and the need to retreat from or attempt to control that threat. While the impact of this reporting on the public is unknown, a more nuanced approach is recommended to better support those bereaved by COVID-19.

Multidisciplinary team meetings in palliative care: an ethnographic study.

OBJECTIVES: Multidisciplinary team meetings are a regular feature in the provision of palliative care, involving a range of professionals. Yet, their purpose and best format are not necessarily well understood or documented. This article describes how hospital and community-based palliative care multidisciplinary team meetings operate to elucidate some of their main values and offer an opportunity to share examples of good practice. METHODS: Ethnographic observations of over 70 multidisciplinary team meetings between May 2018 and January 2020 in hospital and community palliative care settings in intercity London. These observations were part of a larger study examining palliative care processes. Fieldnotes were thematically analysed. RESULTS: This article analyses how the meetings operated in terms of their setup, participants and general order of business. Meetings provided a space where patients, families and professionals could be cared for through regular discussions of service provision. CONCLUSIONS: Meetings served a variety of functions. Alongside discussing the more technical, clinical and practical aspects that are formally recognised aspects of the meetings, an additional core value was enabling affectual aspects of dealing with people who are dying to be acknowledged and processed collectively. Insight into how the meetings are structured and operate offer input for future practice.

Medical professionalism: conflicting values for tomorrow's doctors.

BACKGROUND: New values and practices associated with medical professionalism have created an increased interest in the concept. In the United Kingdom, it is a current concern in medical education and in the development of doctor appraisal and revalidation. OBJECTIVE: To investigate how final year medical students experience and interpret new values of professionalism as they emerge in relation to confronting dying patients and as they potentially conflict with older values that emerge through hidden dimensions of the curriculum. METHODS: Qualitative study using interpretative discourse analysis of anonymized student reflective portfolios. One hundred twenty-three final year undergraduate medical students (64 male and 59 female) from the University of Cambridge School of Clinical Medicine supplied 116 portfolios from general practice and 118 from hospital settings about patients receiving palliative or end of life care. RESULTS: Professional values were prevalent in all the portfolios. Students emphasised patient-centered, holistic care, synonymous with a more contemporary idea of professionalism, in conjunction with values associated with the 'old' model of professionalism that had not be directly taught to them. Integrating 'new' professional values was at times problematic. Three main areas of potential conflict were identified: ethical considerations, doctor-patient interaction and subjective boundaries. Students explicitly and implicitly discussed several tensions and described strategies to resolve them. CONCLUSIONS: The conflicts outlined arise from the mix of values associated with different models of professionalism. Analysis indicates that 'new' models are not simply replacing existing elements. Whilst this analysis is of accounts from students within one UK medical school, the experience of conflict between different notions of professionalism and the three broad domains in which this conflict arises are relevant in other areas of medicine and in different national contexts.

What is a good death? A critical discourse policy analysis.

OBJECTIVE: The concept of a good death is a motivating factor for end of life care policy; this article examines what English end-of-life care (EOLC) policy defines as a good death. METHODS: Critical discourse analysis of policy documents and policy-promoting materials published between 2008 and 2016. RESULTS: Policy explicitly defines a good death as having the following attributes: being treated as an individual, with dignity and respect; being without pain and other symptoms; being in familiar surroundings and being in the company of close family and/or friends. Critical discourse analysis of 54 documents found that rather than just being an outcome or event, descriptions of what makes a death good also include many processes. A more extended definition includes: the person receives holistic EOLC; the dying person is treated with dignity and respect; the death is not sudden and unexpected; people are prepared and have ideally done some advance care planning; people are aware that someone is dying and openly discuss this; on knowing the dying person's preferences, all involved are to work towards achieving these; the place of death is important; the person's family are involved and the needs of the bereaved are considered. CONCLUSION: This analysis indicates the complex nature of the current discourses around good death in EOLC policy, which often focuses on care rather than death. Policy should focus on outlining what quality end-of-life care looks like, rather than assume 'good death' is a suitable outcome statement.

Experience-based design, co-design and experience-based co-design in palliative and end-of-life care.

Experience-based design, co-design, and experience-based co-design can be used within healthcare to design services that improve the patient, carer and staff experience of the services. As palliative and end-of-life care centrally value person-centred care, we believe that service designers, commissioners and those tasked with making quality improvements will be interested in this growing field. This paper outlines these approaches-with a particular emphasis on experience-based co-design-and describes how they are and can be used within palliative and end-of-life care. Based on a rapid review and several case studies, this article highlights the key lessons learnt from previous projects using these approaches and discusses areas for improvement in current reporting of service design projects.

Barriers and facilitators to adherence to group exercise in institutionalized older people living with dementia: a systematic review.

OBJECTIVES: Research suggests targeted exercise is important for people living with dementia, especially those living in residential care. The aim of this review was to collect and synthesize evidence on the known barriers and facilitators to adherence to group exercise of institutionalized older people living with dementia. METHODS: We searched all available electronic databases. Additionally, we searched trial registries (clinicaltrial.gov, and WHO ICTRP) for ongoing studies. We searched for and included papers from January 1990 until September 2017 in any language. We included randomized, non-randomized trials. Studies were not eligible if participants were either healthy older people or people suffering from dementia but not living in an institution. Studies were also excluded if they were not focused on barriers and facilitators to adherence to group exercise. RESULTS: Using narrative analysis, we identified the following themes for barriers: bio-medical reasons and mental wellbeing and physical ability, relationships dynamics, and socioeconomic reasons. The facilitators were grouped under the following thematic frames: bio-medical benefits and benefits related to physical ability, feelings and emotions and confidence improvements, therapist and group relationships dynamics and activity related reasons. CONCLUSIONS: We conclude that institutionalized older people living with dementia, even those who are physically frail, incontinent and/or have mild dementia can demonstrate certain level of exercise adherence, and therefore can respond positively to exercise programs. Tailored, individually-adjusted and supported physical activity, led by a knowledgeable, engaging and well communicating therapist/facilitator improves the adherence to group exercise interventions of institutionalized older people living with dementia.