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BackgroundVisiting restrictions were enacted in Aotearoa New Zealand to reduce transmission of COVID-19 and protect the healthcare system. This research aimed to investigate the experiences of families and clinicians of hospital visiting for people with palliative and end-of-life care needs during restrictions.MethodsSemistructured interviews were completed between March and October 2021 with family members and clinicians who had personally experienced enactment of visiting restrictions during pandemic restrictions. A critical realist ontology was used to approach data analysis, sorting and coding to generate themes.ResultsTwenty-seven participants were interviewed, 13 being families who had experienced bereavement of a family member during the restrictions: seven nurses or physicians and seven being non-bereaved family members. Four themes were generated: patient safety—(re)defining the ‘Visitor’; the primacy of SARS-CoV-2—patient safety and negotiating risk; dying alone: enduring harms; and agency, strategies and workarounds.ConclusionVisitor rights and visitor policy at the end of life require greater protection during a pandemic. Transparent, coherent, publicly available evidence-based guidelines that key stakeholders, including patients, families and ethicists, are included in producing, are urgently required. We want to avert a legacy of disenfranchised grief in future pandemics.

Background: While ‘home’ is cited most frequently as being the preferred place of death, most people will die in institutions. Yet, the meaning and significance of home for people nearing the end of life has not been fully explored. Aim: The aim of this article is to critically examine the meaning of home for dying patients and their families. Design: The qualitative study used video-reflexive ethnography methods. Data were collected and analysed over an 18-month period. Setting/participants: Participants were recruited from two Australian sites: a palliative care day hospital and an acute hospital. Participants included patients with a prognosis of 6 months or less (n = 29), their nominated family member(s) (n = 5) and clinicians (n = 36) caring for them. Patients and families were ‘followed’ through care settings including the palliative care unit and into their own homes. Results: Whether or not participants deemed space(s) safe or unsafe was closely related to the notion of home. Six themes emerged concerning this relationship: ‘No place like home’; ‘Safety, home and the hospital’; ‘Hospital “becomes” home’; ‘Home “becomes” hospital’; ‘Hospital and “connections with home”’; and ‘The built environment’. Conclusion: Home is a dynamic concept for people nearing the end of life and is concerned with expression of social and cultural identity including symbolic and affective connections, as opposed to being merely a physical dwelling place or street address. Clinicians caring for people nearing the end of life can foster linkages with home by facilitating connections with loved ones and meaningful artefacts.

Introduction To redress the scholarly preoccupation with gaps, issues, and problems in palliative care, this article extends previous findings on what constitutes brilliant palliative care to ask what brilliant nursing practices are supported and promoted. Methods This study involved the methodology of POSH‐VRE, which combines positive organisational scholarship in healthcare (POSH) with video‐reflexive ethnography (VRE). From August 2015 to May 2017, inclusive, nurses affiliated with a community health service who delivered palliative care, contributed to this study as co‐researchers (n = 4) or participants (n = 20). Patients who received palliative care (n = 30) and carers (n = 16) contributed as secondary participants, as they were part of observed instances of palliative care. With a particular focus on the practices and experiences that exceeded expectations and brought joy and delight, the study involved capturing video‐recordings of community‐based palliative care in situ; reflexively analysing the recordings with the nurses; as well as ethnography to witness, experience, and understand practices and experiences. Data were analysed, teleologically, to clarify what brilliant practices were supported and promoted. Results Brilliant community‐based palliative care nursing largely involved maintaining normality in patients’ and carers’ lives. The nurses demonstrated this by masking the clinical aspects of their role, normalising these aspects, and appreciating alternative ‘normals’. Conclusion Redressing the scholarly preoccupation with gaps, issues, and problems in palliative care, this article demonstrates how what is ordinary is extraordinary. Specifically, given the intrusiveness and abnormalising effects of technical clinical interventions, brilliant community‐based palliative care can be realised when nurses enact practices that serve to promote a patient or carer to normality. Patient or Public Contribution Patients and carers contributed to this study as participants, while nurses contributed to this study as co‐researchers in the conduct of the study, the analysis and interpretation of the data, and the preparation of the article.

Introduction Given longstanding barriers that obstruct integrated palliative care, particularly for culturally and linguistically diverse communities, this article demonstrates a way to engage with Syrian, Bhutanese and African communities to learn about brilliant palliative care with and from members of these communities. Methods This study involved the methodology of POSH‐VRE, which combines positive organisational scholarship in healthcare (POSH) with video‐reflexive ethnography (VRE). Members of the Syrian, Bhutanese, and African communities (n = 14) participated in a focus group or an interview to consider understandings of palliative care; conceptualisations of a good death; how and why palliative care was typically enacted in their communities; the associated effects; as well as the relationship between culturally and linguistically diverse communities and public palliative care services. Discussions were aided by video recordings captured during the previous study on brilliant palliative care, which participants were invited to review. Video recordings and transcripts of the focus groups and interview were analysed using reflexive thematic analysis. Results The participants demonstrated considerable variability in the ways that palliative care was understood and enacted. For some, death was a taboo topic, while for others, it was a reality that was required to face, particularly in war‐torn regions. Similarly, while doctors were held in high regard, participants held different views about how they should enact palliative care and the anticipation of death, particularly because family members were deemed to be a pivotal part of palliative care. To improve the care of people of culturally and linguistically diverse communities who experience a life‐limiting illness, participants highlighted three opportunities. These included the avoidance of generalisations, prioritising the needs and preferences of cultural groups, and leveraging the community network. Conclusion This study demonstrated how reciprocal understandings of palliative care were potentiated using POSH‐VRE. Specifically, the members of the Bhutanese, African and Syrian communities demonstrated diversity in the needs, preferences, and customs of culturally and linguistically diverse communities. As such, integrated palliative care is likely to be bolstered by relinquishing assumptions about how cultural groups wish to be referred to and cared for and adopting a public health approach to palliative care that embraces both a population‐based and person‐centred approach to care. Patient or Public Contribution Members of the Bhutanese, African and Syrian communities contributed to this study as participants and co‐researchers, contributing to the analysis and interpretation of the data and in the preparation of the article.

Background Telehealth palliative care delivery has been shown to be feasible and acceptable for patients, families and clinicians across a number of contexts. However, the rapid implementation of telehealth during the pandemic exposed both challenges and opportunities for optimising telehealth integration in palliative care. This study capitalised on clinicians' experience to better understand the complexities of telehealth and palliative care with a focus on access and equity. Methods We deployed a qualitative interview study exploring Australia and Aotearoa New Zealand (NZ) clinicians’ perspectives of telehealth with a focus on underserved palliative care populations. The study was underpinned by applied critical realism evaluation. Data were analysed through an equity lens using Srivastava and Hopwood’s framework, applying critical realist evaluation questions: what are these data telling us about what works, for whom, in which contexts and with what outcomes? Results We recruited a total of twenty-two participants [doctors ( n  = 7) nurses ( n  = 11) allied health ( n  = 4)]. Fifteen participants were based in Aotearoa NZ and seven in Australia. Analysis resulted in the following four key themes: Extending the reach of palliative care; Underserved groups – the thin line of equity and access; Patient safety and quality- the complexities of clinical work; Tele-care, connection and creativity. Conclusions Our findings show that although the adoption of telehealth can extend the reach of palliative care, there is, at the same time, the potential to further marginalise those for whom palliative care is already inaccessible. Support and education for clinicians are needed to ensure safe and high-quality telehealth, as well as organisational guidelines and structures to optimise the use of telehealth. There is a need for further research using ethnographic, participatory as well as other qualitative and quantitative methods to identify approaches that optimise access to palliative care and telehealth for underserved groups. This should include the perspectives of patients and families themselves.

Background Following stroke, a sense of well‐being is critical for quality of life. However, people living with stroke, and health professionals, suggest that well‐being is not sufficiently addressed within stroke services, contributing to persistent unmet needs. Knowing that systems and structures shape clinical practice, this study sought to understand how health professionals address well‐being, and to examine how the practice context influences care practice. Methods Underpinned by Interpretive Description methodology, we interviewed 28 health professionals across multiple disciplines working in stroke services (acute and rehabilitation) throughout New Zealand. Data were analysed using applied tension analysis. Results Health professionals are managing multiple lines of work in stroke care: biomedical work of investigation, intervention and prevention; clinical work of assessment, monitoring and treatment; and moving people through service. While participants reported working to support well‐being, this could be deprioritised amidst the time‐oriented pressures of the other lines of work that were privileged within services, rendering it unsupported and invisible. Conclusion Stroke care is shaped by biomedical and organisational imperatives that privilege physical recovery and patient throughput. Health professionals are not provided with the knowledge, skills, time or culture of care that enable them to privilege well‐being within their work. This has implications for the well‐being of people with stroke, and the well‐being of health professionals. In making these discourses and culture visible, and tracing how these impact on clinical practice, we hope to provide insight into why well‐being work remains other to the ‘core’ work of stroke, and what needs to be considered if stroke services are to better support people's well‐being. Patient or Public Contributions People with stroke, family members and people who provide support to people with stroke, and health professionals set priorities for this research. They advised on study conduct and have provided feedback on wider findings from the research.

The concept of a ‘good death’ has long been a subject of philosophical, clinical, and cultural debate. Despite its universal relevance and importance, no consensus exists among scholars or practitioners regarding its definition. This critical essay interrogates the potential value or tyranny of the term, drawing on contemporary literature and insights from a global multidisciplinary webinar. The discussion elucidates tensions between palliative care practices and diverse cultural understandings of dying, revealing how normative assumptions may marginalise individual preferences and communal experiences. Through a synthesis of webinar contributions, the essay explores three central tensions: the dichotomy of good versus bad death, varied perspectives on suffering, and choice and control. Each panellist’s perspective illuminates the complexities inherent in defining or realising a good death. The synthesis highlights how prescriptive interpretations may stigmatise and undermine personal choices and operate oblivious to the structural determinants that influence dying experiences. The essay concludes with three actionable recommendations aimed at fostering inclusive discourse and practice: (1) embracing pluralism in death narratives, (2) addressing systemic inequities in end-of-life care, and (3) expanding support for non-clinical dying environments. Ultimately, this work advocates for a reframing of the good death paradigm, one that prioritises diversity and contextual sensitivity.

The aim of this study was to investigate patients' and families' perspectives of safety and quality in the setting of a life-limiting illness. Data reported here were generated from a qualitative study using video-reflexive ethnographic methodology. Data were collected over 18 months and generated through participant observation, shadowing of clinicians, field-interviews and semi-structured interviews with patients and families. The study was conducted at two hospital sites in Sydney, Australia and in patients' homes. Patients with an advanced life-limiting illness (n = 29) ranging in age between 27 and 89 years and family members (n = 5) participated in the study. Patient safety remains important to dying patients and families. For dying people, iatrogenic harm is not regarded as 'one off' incidents. Rather, harm is experienced as a result of an unfolding series of negative events. Critically, iatrogenic harm is emotional, social and spiritual and not solely technical-clinical misadventure and is inextricably linked with feeling unsafe. Thus, patient safety extends beyond narrowly defined technical-clinical parameters to include interpersonal safety. Current approaches to patient safety do not address fully the needs of dying patients and their families. Patients and their families regard poor communication with and by health professionals to be harmful in and of itself.

Recent years have witnessed the rise of patient-reported outcome measures (PROMs) in palliative care (PC), particularly those focused on the standardized measurement of symptom burden. These measures seek to evaluate the quality of PC through the quantification of various aspects of potential suffering (e.g., sleeplessness, loss of appetite, and pain). Further, drawing on patient experience, they provide a framework for evaluating the effectiveness of, and at times expanding, PC services. The aim of this paper is to provide a theoretically informed normative critique of PROMS-PC through a critical engagement with heterogeneous literatures. A hermeneutic narrative review underpinned by a view of \"knowing\" as an ongoing social accomplishment and inspired by complexity theory. This narrative review highlights some limitations to the development of PROMs, including the use of proxies to complete them, and how the outcomes may not always reflect either the character of PC or the key aspects of practice and experience therein. In their current form, PROMs have the potential to skew understandings of service quality, for example, by privileging one aspect of quality, that is, physical symptoms over other aspects of quality such as communication with care providers.

There is international consensus of the need for improved palliative and end-of-life care in hospital settings. What is less clear is how such improvements might be realised in practice. Research and practice improvement methodologies need to acknowledge the relational, spiritual, moral and ethical as well as physical dimensions of death and dying if improvements in care are to be achieved. Aims and objectives: The aim of this article is to explore the potential of video-reexive ethnography as a practice development methodology to improve care of people with a life-limiting illness in the hospital setting.