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Background: Transfers from hospital or 'hospice palliative care units' to care homes for end-of-life care are an increasingly common part of clinical practice but are a source of anxiety and distress for patients, relatives and healthcare professionals. Aim: To understand the experiences of patients discharged to care homes for end-of-life care. Design: Systematic review and narrative synthesis of the UK literature concerning inpatient transfer from a hospital or hospice palliative care unit to a care home for end-of-life care. Results: The published literature is very limited: only three papers and one conference abstract were identified, all of low quality using Gough's weight of evidence assessment. No papers examined transfer from hospital: all were of transfers from hospices and were retrospective case note reviews. Many patients were reported to have been negative or ambivalent about moving and experienced feelings of anxiety or abandonment when transferred. Relatives were often either vehemently opposed or ambivalent. Although some came to accept transfer, others reported the transfer to have seriously affected their loved one's quality of life and that the process of finding a care home had been traumatic. No studies investigated patients' views prospectively, the views of staff or the processes of decision-making. Conclusion: The UK literature is very limited, despite such transfers being an increasingly common part of clinical practice and a source of concern to patients, relatives and staff alike. Further research is urgently needed in this area, especially studies of patients themselves, in order to understand their experiences and views. [ABSTRACT FROM AUTHOR]

Background: Despite a fast-paced environment, the emergency clinician has a duty to meet the palliative patient's needs. Despite suggested models and interventions, this remains challenging in practice. Aim: To raise awareness of these challenges by exploring the experience of palliative care patients and their families and informal carers attending the emergency department, and of the clinicians caring for them. Design: Qualitative systematic literature review and thematic synthesis. Search terms related to the population (palliative care patients, family carers, clinicians), exposure (the emergency department) and outcome (experience). The search was international but restricted to English and used a qualitative filter. Title, abstracts and, where retrieved, full texts were reviewed independently by two reviewers against predefined inclusion criteria arbitrated by a third reviewer. Studies were appraised for quality but not excluded on that basis. Data sources: MEDLINE [1946-], Embase[1947-], CINAHL [1981-] and PsycINFO [1987-] with a bibliography search. Results: 19 papers of 16 studies were included from Australia (n = 5), the United Kingdom (n = 5), and United States (n = 9) representing 482 clinical staff involved in the emergency department (doctors, nurses, paramedics, social workers, technicians), 61 patients and 36 carers. Nine descriptive themes formed three analytic themes: 'Environment and Purpose', 'Systems of Care and Interdisciplinary Working' and 'Education and Training'. Conclusion: In the included studies, provision of emergency palliative care is a necessary purpose of the emergency department. Failure to recognise this, gain the necessary skills or change to systems better suited to its delivery perpetuates poor implementation of palliative care in this environment. [ABSTRACT FROM AUTHOR]

Background: Telephone advice lines have been recommended internationally to support around-the-clock care for people living at home with advanced illness. While they undoubtedly support care, there is little evidence about what elements are needed for success. A national picture is needed to understand, improve and standardise service delivery/care. Aim: To explore telephone advice lines for people living at home with advanced illness across the four UK nations, and to construct a practical framework to improve services. Design: A cross-national evaluation of telephone advice lines using structured qualitative interviews. A patient and public involvement workshop was conducted to refine the framework. Setting/participants: Professionals with responsibilities for how palliative care services are delivered and/or funded at a local or regional level, were purposively sampled. Results: Seventy-one interviews were conducted, covering 60 geographical areas. Five themes were identified. Availability : Ten advice line models were described. Variation led to confusion about who to call and when. Accessibility, awareness and promotion : It was assumed that patients/carers know who to call out-of-hours, but often they did not. Practicalities : Call handlers skills/expertise varied, which influenced how calls were managed. Possible responses ranged from signposting to organising home visits. Integration/continuity of care : Integration between care providers was limited by electronic medical records access/information sharing. Service structure/commissioning : Sustained funding was often an issue for charitably funded organisations. Conclusions: Our novel evidence-based practical framework could be transformative for service design/delivery, as it presents key considerations relating to the various elements of advice lines that may impact on the patient/carer experience. [ABSTRACT FROM AUTHOR]

Background: Healthcare professionals report challenges in supporting dying patients who have dependent children. These parents are often uncertain how to meet the needs of their children and require appropriate support from professionals. There is limited evidence based guidance for professionals around this issue, which is informed by the views and experiences of children themselves. Aim: To develop an understanding of the perspective of children on living with parental life-limiting illness and inform recommendations for healthcare professionals. Design: Qualitative semi-structured interviews were conducted, with thematic analysis of the data. Setting/participants: A diverse sample of 32 children aged 6–17, whose parent was living with life-limiting illness, were recruited from across the United Kingdom. Results: Despite the challenges of living with a parent with a life-limiting illness, the children display agency in their response. The children: feel a responsibility to look after their family; negotiate a relationship with healthcare; employ strategies to maintain some normality; and ensure that the inevitable sadness does not become overwhelming. Conclusions: Five recommendations for healthcare professionals were developed from the findings. Clinicians should encourage dying parents to: (1) acknowledge the agency of children; (2) recognise children's caregiving roles; (3) engender children's trust in healthcare; (4) maintain some normality; and (5) discuss emotions with their children. Implementing these recommendations will assist parents with a life-limiting illness to provide evidence-based support to their dependent children. [ABSTRACT FROM AUTHOR]

Background: The impact of assisted hydration on symptoms and survival at the end of life is unclear. Little is known about optimal strategies for communicating and decision-making about this ethically complex topic. Hydration near end of life is known to be an important topic for family members, but conversations about assisted hydration occur infrequently despite guidance suggesting these should occur with all dying people. Aim: To explore the views and experiences of doctors experienced in end-of-life care regarding communicating with patients and families and making decisions about assisted hydration at the end of life. Design: Qualitative study involving framework analysis of data from semi-structured interviews. Setting/participants: Sixteen UK-based Geriatrics and Palliative Medicine doctors were recruited from hospitals, hospices and community services from October 2019 to October 2020. Results: Participants reported clinical, practical and ethical challenges associated with this topic. The hospital setting provides barriers to high-quality communication with dying patients and their families about assisted hydration, which may contribute to the low incidence of documented assisted hydration-related conversations. Workplace culture in some hospices may make truly individualised decision-making about this topic more difficult. Lack of inclusion of patients in decision-making about assisted hydration appears to be common practice. Conclusions: Proactive, routine discussion with dying people about hydration-related issues is indicated in all cases. There is room for debate regarding the limits of shared decision-making and the benefits of routine discussion of assisted hydration with all dying people. Clinicians have to navigate multiple barriers as they strive to provide individualised care. [ABSTRACT FROM AUTHOR]

Background: Experiences of end-of-life care and early bereavement during the COVID-19 pandemic are poorly understood. Aim: To identify clinical and demographic risk factors for sub-optimal end-of-life care and pandemic-related challenges prior to death and in early bereavement, to inform clinical practice, policy and bereavement support. Design: Online national survey of adults bereaved in the UK (deaths between 16 March 2020 and 2 January 2021), recruited via media, social media, national associations and organisations. Setting/participants: 711 participants, mean age 49.5 (SD 12.9, range 18–90). 628 (88.6%) were female. Mean age of the deceased was 72.2 (SD 16.1, range miscarriage to 102 years). 311 (43.8%) deaths were from confirmed/suspected COVID-19. Results: Deaths in hospital/care home increased the likelihood of poorer experiences at the end of life; for example, being unable to visit or say goodbye as wanted (p < 0.001). COVID-19 was also associated with worse experiences before and after death; for example, feeling unsupported by healthcare professionals (p < 0.001), social isolation/loneliness (OR = 0.439; 95% CI: 0.261–0.739), and limited contact with relatives/friends (OR = 0.465; 95% CI: 0.254–0.852). Expected deaths were associated with a higher likelihood of positive end-of-life care experiences. The deceased being a partner or child also increased the likelihood of positive experiences, however being a bereaved partner strongly increased odds of social isolation/loneliness, for example, OR = 0.092 (95% CI: 0.028–0.297) partner versus distant family member. Conclusions: Four clear risk factors were found for poorer end-of-life care and pandemic-related challenges in bereavement: place, cause and expectedness of death, and relationship to the deceased. [ABSTRACT FROM AUTHOR]

Background: COVID-19 public health restrictions have affected end-of-life care experiences for dying patients and their families. Aim: To explore bereaved relatives' experiences of quality of care and family support provided during the last days of life; to identify the impact of factors associated with perceived support. Design: A national, observational, open online survey was developed and disseminated via social media, public fora and professional networks (June–September 2020). Validated instruments and purposively designed questions assessed experiences. Analysis used descriptive statistics, logistic regression and thematic analysis of free-text responses. Participants: Individuals (⩾18 years) who had experienced the death of a relative/friend (all care settings) within the United Kingdome during the COVID-19 pandemic. Results: Respondents (n = 278, mean 53.4 years) tended to be female (n = 216, 78%); over half were 'son/daughter' (174, 62.6%) to the deceased. Deceased individuals (mean 81.6 years) most frequently died in their 'usual place of care' (n = 192, 69.3%). Analysis established five conceptual themes affecting individualised care: (1) public health restrictions compounding the distress of 'not knowing'; (2) disparate views about support from doctors and nurses; (3) challenges in communication and level of preparedness for the death; (4) delivery of compassionate care; (5) emotional needs and potential impact on grief. Male respondents (OR 2.9, p = 0.03) and those able to visit (OR 2.2, p = 0.04) were independently associated with good perceptions of family support. Conclusion: Despite public health restrictions, individualised care can be enabled by proactive, informative communication; recognising dying in a timely manner and facilitating the ability to be present before death. [ABSTRACT FROM AUTHOR]

Background: During infectious epidemics, healthcare workers are required to deliver traditional care while facing new pressures. Time and resource restrictions, a focus on saving lives and new safety measures can lead to traditional aspects of care delivery being neglected. Aim: Identify barriers to delivering end-of-life care, describe attempts to deliver care during the COVID-19 pandemic, and understand the impact this had on staff. Design: A rapid appraisal was conducted incorporating a rapid review of policies from the United Kingdom, semi-structured telephone interviews with healthcare workers, and a review of mass print media news stories and social media posts describing healthcare worker's experiences of delivering care during the pandemic. Data were coded and analysed using framework analysis. Setting/Participants: From a larger ongoing study, 22 interviews which mentioned death or caring for patients at end-of-life, eight government and National Health Service policies affecting end-of-life care delivery, eight international news media stories and 3440 publicly available social media posts were identified. The social media analysis centred around 274 original tweets with the highest reach, engagement and relevance. Incorporating multiple workstreams provided a broad perspective of end-of-life care during the COVID-19 pandemic in the United Kingdom. Results: Three themes were developed: (1) restrictions to traditional care, (2) striving for new forms of care and (3) establishing identity and resilience. Conclusions: The COVID-19 pandemic prohibited the delivery of traditional care as practical barriers restricted human connections. Staff prioritised communication and comfort orientated tasks to re-establish compassion at end-of-life and displayed resilience by adjusting their goals. [ABSTRACT FROM AUTHOR]

Background: Constipation is a major problem for many older adults, more so for those who are receiving specialist palliative care. However, limited research reports the subjective experiences of constipation, despite evidenced differences between the healthcare professional and patient/carer perspective. Aim: The main aim of this study is to explore the experience of how constipation is assessed and managed within specialist palliative care from the patient, carer and healthcare professional perspective. Design: Exploratory, qualitative design, utilising focus groups and interviews, and analysed using thematic analysis. Setting/participants: Six focus groups with 27 healthcare professionals and semi-structured interviews with 13 patients and 5 family caregivers in specialist palliative care units across three regions of the United Kingdom. Results: Constipation impacted physically, psychologically and socially on patients and families; however, they felt staff relegated it on the list of importance. Lifestyle modifications implemented at home were not incorporated into their specialist palliative care plan within the hospice. Comparatively, healthcare professionals saw constipation solely as a physical symptom. Assessment focused on the physical elements of constipation, and management was pharmacologically driven. Healthcare professionals reported patient embarrassment as a barrier to communicating about bowel care, whereas patients wanted staff to initiate communication and discuss constipation openly. Conclusion: Assessment and management of constipation may not yet reflect the holistic palliative care model. A focus on the pharmacological management may result in lifestyle modifications being underutilised. Healthcare professionals also need to be open to initiate communication on bowel care and consider non-pharmacological approaches. It is important that patients and families are supported in self-care management, alongside standardised guidelines for practice and for healthcare professionals to facilitate this. [ABSTRACT FROM AUTHOR]

Background: Evaluations of complex interventions compared to usual care provided in palliative care are increasing. Not describing usual care may affect the interpretation of an intervention's effectiveness, yet how it can be described remains unclear. Aim: To demonstrate the feasibility of using multi-methods to describe usual care provided in randomised controlled trials (RCTs) of complex interventions, shown within a feasibility cluster RCT. Design: Multi-method approach comprising usual care questionnaires, baseline case note review and focus groups with ward staff completed at study end. Thematic analysis of qualitative data, descriptive statistics of quantitative data, followed by methodological triangulation to appraise approach in relation to study aim. Setting/participants: Four general medical wards chosen from UK hospitals. Purposive sampling of healthcare professionals for usual care questionnaires, and focus groups. Review of 20 patients' notes from each ward who died during admission or within 100 days of discharge. Results: Twenty-three usual care questionnaires at baseline, two focus groups comprising 20 healthcare professionals and 80 case note reviews. Triangulation of findings resulted in understanding the usual care provided to the targeted population in terms of context, structures, processes and outcomes for patients, families and healthcare professionals. Usual care was described, highlighting (1) similarities and embedded practices, (2) heterogeneity and (3) subtle changes in care during the trial within and across sites. Conclusions: We provide a feasible approach to defining usual care that can be practically adopted in different settings. Understanding usual care enhances the reliability of tested complex interventions, and informs research and policy priorities. [ABSTRACT FROM AUTHOR]

Background: The use of quality-adjusted life years rests on the assertion that the objective of the health care system is to improve health. Aim: To elicit the views of expert stakeholders on the purpose and evaluation of supportive end of life care, and explore how different purposes of end of life care imply the need for different evaluative frameworks. Design: Semi-structured qualitative interviews, analysed through an economic lens using a constant comparative approach. Participants: Twenty professionals working in or visiting the United Kingdom or Republic of Ireland, with clinical experience and/or working as academics in health-related disciplines. Results: Four purposes of end of life care were identified from and are critiqued with the aid of the qualitative data: to improve health, to enable patients to die in their preferred place, to enable the patient to experience a good death, and to enable the patient to experience a good death, and those who are close to the patient to have an experience which is as free as possible from fear, stress and distress. Conclusion: Managing symptoms and reducing anxiety were considered to be core objectives of end of life care and fit with the wider health service objective of improving/maximising health. A single objective across the entire health system ensures consistency in the way that resource allocation is informed across that entire system. However, the purpose of care at the end of life is more complex, encompassing diverse and patient-centred objectives which we have interpreted as enabling the patient to experience a good death. [ABSTRACT FROM AUTHOR]

Background: Little research has explored the detail of practice when using sedative medications at the end of life. One work package of the I-CAN-CARE research programme investigates this in UK palliative care. Aims: To investigate current practices when using sedative medication at the end of life in London, UK, by (1) qualitatively exploring the understandings of palliative care clinicians, (2) examining documented sedative use in patient records and (3) comparing findings from both investigations. Design: We conducted focus groups with experienced palliative care physicians and nurses, and simultaneously reviewed deceased patient records. Setting/participants: In total, 10 physicians and 17 senior nurses in London hospice or hospital/community palliative care took part in eight focus groups. Simultaneously, 50 patient records for people who received continuous sedation at end of life in the hospice and hospital were retrieved and reviewed. Results: Focus group participants all said that they used sedative medication chiefly for managing agitation or distress; selecting drugs and dosages as appropriate for patients' individual needs; and aiming to use the lowest possible dosages for patients to be 'comfortable', 'calm' or 'relaxed'. None used structured observational tools to assess sedative effects, strongly preferring clinical observation and judgement. The patient records' review corroborated these qualitative findings, with the median continuous dose of midazolam administered being 10 mg/24 h (range: 0.4–69.5 mg/24 h). Conclusion: Clinical practice in these London settings broadly aligns with the European Association for Palliative Care framework for using sedation at the end of life, but lacks any objective monitoring of depth of sedation. Our follow-on study explores the utility and feasibility of objectively monitoring sedation in practice. [ABSTRACT FROM AUTHOR]

Background: Limited evidence exists on the impact of palliative rehabilitation during systemic treatment of advanced cancer. Aim: To explore the experiences and perceptions of patients and healthcare professionals on the feasibility and acceptability of palliative rehabilitation during advanced lung cancer treatment. Design: Qualitative design using individual semi-structured interviews transcribed verbatim and analysed thematically. Setting/participants: Eight patients and six healthcare professionals were recruited from a regional cancer centre in the United Kingdom following completion of a 6-week individualised behaviour change study which combined physical activity and nutritional guidance. Results: Palliative rehabilitation and study participation were positively viewed by both participants and healthcare professionals. Five themes were identified from patient interviews within an overarching theme of living with and beyond an advanced cancer diagnosis: (1) challenges of living with incurable cancer, (2) personal and altruistic reasons for participating in rehabilitation, (3) applicability of palliative rehabilitation content, (4) barriers and facilitators to adherence and (5) positive impact on self and others. Three themes were identified from healthcare professionals, within an overarching theme of palliative rehabilitation: exploring the concept (1) pre-study-mixed perceptions of palliative rehabilitation, (2) perceived benefits for patients and families and (3) lessons for future research. Conclusion: Patients described personal benefits associated with setting their own goals for physical activity and dietary intake. Healthcare professionals who initially expressed a negative or indifferent stance towards palliative rehabilitation, displayed a mind-set change and were keen to explore further opportunities to expand the evidence base. [ABSTRACT FROM AUTHOR]

Background: In dementia care, a large number of treatment decisions are made by family carers on behalf of their family member who lacks decisional capacity; advance care planning can support such carers in the decision-making of care goals. However, given the relative importance of advance care planning in dementia care, the prevalence of advance care planning in dementia care is poor. Aim: To evaluate the effectiveness of advance care planning with family carers in dementia care homes. Design: Paired cluster randomized controlled trial. The intervention comprised a trained facilitator, family education, family meetings, documentation of advance care planning decisions and intervention orientation for general practitioners and nursing home staff. Setting/participants: A total of 24 nursing homes with a dementia nursing category located in Northern Ireland, United Kingdom. Family carers of nursing home residents classified as having dementia and judged as not having decisional capacity to participate in advance care planning discussions. Results: The primary outcome was family carer uncertainty in decision-making about the care of the resident (Decisional Conflict Scale). There was evidence of a reduction in total Decisional Conflict Scale score in the intervention group compared with the usual care group (-10.5, 95% confidence interval: -16.4 to -4.7; p < 0.001). Conclusion: Advance care planning was effective in reducing family carer uncertainty in decision-making concerning the care of their family member and improving perceptions of quality of care in nursing homes. Given the global significance of dementia, the implications for clinicians and policy makers include them recognizing the importance of family carer education and improving communication between family carers and formal care providers. [ABSTRACT FROM AUTHOR]

Background: Emergency department-based palliative care services are increasing, but research to develop these services rarely includes input from emergency clinicians, jeopardizing the effectiveness of subsequent palliative care interventions. Aim: To collaboratively identify with emergency clinicians' improvement priorities for emergency department-based palliative care for older people. Design: This was one component of an experience-based co-design project, conducted using semi-structured interviews and feedback sessions. Setting/participants: In-depth interviews with 15 emergency clinicians (nurses and doctors) at a large teaching hospital emergency department in the United Kingdom exploring experiences of palliative care delivery for older people. A thematic analysis identified core challenges that were presented to 64 clinicians over five feedback sessions, validating interview findings, and identifying shared priorities for improving palliative care delivery. Results: Eight challenges emerged: patient age; access to information; communication with patients, family members, and clinicians; understanding of palliative care; role uncertainty; complex systems and processes; time constraints; and limited training and education. Through feedback sessions, clinicians selected four challenges as improvement priorities: time constraints; communication and information; systems and processes; and understanding of palliative care. As resulting improvement plans evolved, "training and education" replaced "time constraints" as a priority. Conclusion: Clinician priorities for improving emergency department-based palliative care were identified through collaborative, iterative processes. Though generally aware of older palliative patients' needs, clinicians struggled to provide high-quality care due to a range of complex factors. Further research should identify whether priorities are shared across other emergency departments, and develop, implement, and evaluate strategies developed by clinicians. [ABSTRACT FROM AUTHOR]

Background: Caring for dying people can contribute to moral distress experienced by healthcare professionals. Moral distress can occur when this caring is restricted by organisational processes, resources or the provision of futile care. These factors apply to end of life care in nursing homes but research is lacking. Aim: To describe how nursing home staff experience moral distress when caring for residents during and at the end of life. Methods: An interpretive descriptive design, using the critical incident technique in semi-structured interviews to collect data from nursing home staff. Data were analysed using a thematic analysis approach. Setting: Four nursing homes in one large metropolitan area. Participants: A total of 16 staff: 2 nurse managers, 4 nurses and 10 care assistants. Findings: Participants described holding ‘good dying’ values which influenced their practice. The four practice-orientated themes of advocating, caring, communicating and relating with residents were found to influence interactions with residents, relatives, general practitioners, and colleagues. These led staff to be able to ‘do the right thing’ or to experience ‘powerlessness’, which could in turn lead to staff perceiving a ‘bad death’ for residents. Conclusion: When there are incongruent values concerning care between staff and others involved in the care of residents, staff feel powerless to ‘do the right thing’ and unable to influence care decisions in order to avoid a ‘bad death’. This powerlessness is the nature of their moral distress. [ABSTRACT FROM AUTHOR]

Background: The role of oxygen therapy to palliate dyspnoea is controversial. Without a clear evidence base oxygen is commonly prescribed, sometimes to the detriment of patients. This use of oxygen appears to be an entrenched culture, the roots of which remain obscure. Aim: To explore healthcare professionals’ perceptions of oxygen therapy in palliative care. Design: Interpretative phenomenological analysis study utilising semi-structured interviews to explore beliefs and behaviours of healthcare professionals regarding palliative oxygen therapy. Data were recorded, transcribed and analysed using interpretative phenomenological analysis. Setting/participants: A total of 34 healthcare professionals, including doctors, nurses, pharmacists and paramedics in the United Kingdom, who were involved in prescribing, or administering, oxygen therapy to palliate dyspnoea. Results: Most healthcare professionals in this study were well informed about oxygen therapy; all recognised the role of oxygen in palliative care setting as important. The overarching theme of compassion identified sub-themes of ‘comfort’, ‘do anything and everything’ and ‘family benefit’. However, the use of oxygen in the palliative care setting was not without its dilemmas, as additional sub-themes of ‘controversy’, ‘doubt’ and ‘dependency’ illustrated. Conclusion: Findings suggest that oxygen therapy in palliative care poses an on-going dilemma for healthcare professionals striving to provide optimum care. It seems patients and families often expect and welcome oxygen, but the perception of oxygen as a solution to dyspnoea can conflict with healthcare professionals’ own doubt and experiences. There appears to be an emotional cost associated with this dilemma and the choices that need to be made. [ABSTRACT FROM AUTHOR]