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This is the end of project report for the mapping exercise conducted by a team at The Open Univesity. The project focused on identifying use of the Ambitions for Palliative and End of Life Care framework. This report includes the findings of the study and recommendations for future action. The project was funded by NHS E&I and conducted in 2021-2022.

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.

Narratives of COVID is an edited book published by The Open University, edited by Dr Erica Borgstrom and Dr Sharon Mallon. The book contains over 30 contributors who share poems, personal narrative essays, and short reports about a range of experiences related to death, dying and grief during 2020 and 2021. This item includes a short PowerPoint presentation that talks about the book includes links on where to access it, including free copies.

This is a presentation that Caroline Lloyd gave to Open Thanatology in December 2022. It shares the findings from part of her completed PhD work on perinatal loss for adolescent females.

As part of our project examining how people have used the Ambitions framework, in November 2022 we ran four workshops. Each workshop had a theme: - sharing learning - strategy, self-assessment, and measuring progress - partnership working - community The documents here include: - Powerpoint slides from each workshop as a Powerpoint file - Slides from each workshop but as a pdf file - overview of the themes

A co-hosted event about bereavement from Open Thanatology and the WELS Faculty, supported by the Comms teams. Features a 1 hour recording (transcript and overview provided) of four panelists providing their perspectives on 'Bereavement - what helps' based on their research and professional experience. Topics included grief support pyramid, men's grief, social media, and cultural diversity and bereavement.

In this Open Thanatology presentation, Anne Butterworth shares her ongoing PhD research and how she is using video ethnography to study district nursing in the context of palliative care.

This presentation by Avril Tynan (visiting academic with Open Thanatology in 2022/2023) covers her developing work on the links bewteen gardens and grief in a range of literature and art. The presentation was held in November 2022 for Open Thanatology.

Palliative care professionals often speak of the importance of forming meaningful relationships with patients and their families. Trust and rapport, usually established over extended periods of time through face-to-face interactions, and a ‘gentle honesty’ regarding end-of-life and death are key aspects of developing a sense of intimacy with people who are approaching the end of their lives. A fundamental feature of this intimacy is conveying a sense of ‘being with’ a patient. However, these ways of working were greatly challenged by the impact of COVID-19. This article explores how intimacy both was and was not established at the height of the pandemic, and it describes the extent to which shared concerns functioned as a new means to create a sense of a common experience.

Supplemental material, sj-docx-1-pmj-10.1177_02692163211017023 for ‘Saying goodbye’ during the COVID-19 pandemic: A document analysis of online newspapers with implications for end of life care by Lucy E Selman, Ryann Sowden and Erica Borgstrom in Palliative Medicine

Dr Maddie Blackburn presented her work on 'Sexuality in young people with life-limiting and or lifethreatening conditions, on an uncertain life-course’ to the Open Thanatology group in 2021. This includes the slides used and a recording of the online presentation.

Dr Aimee Middlemiss presentation to the Open Thanatology group in November 2021. Her research focuses on second trimester pregnancy loss; content warning that the talk discusses people's experiences of such loss and references to the physical appearance of the baby. Item includes both a recording of her presentation and the slides.