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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]

The editor focuses on COVID-19 and palliative care research. Topics include much COVID-19 palliative care research to date has been small and local in scale and scope; palliative care has responded innovatively to needs created by the pandemic; and palliative care research would be fundamental to informing approaches to care.

Background: In many countries, achieving a home death represents a successful outcome from both a patient welfare and commissioning viewpoint. Significant variation exists in the proportion of home deaths achieved internationally, with many countries unable to meet the wishes of a large number of patients. This review builds on previous literature investigating factors influencing home death, synthesising qualitative research to supplement evidence that quantitative research in this field may have been unable to reach. Aim: To identify and understand the barriers and facilitators influencing death at home. Design: Meta-ethnography. Data sources: The review adhered to the PRISMA guidelines. A systematic literature search was conducted using five databases: PubMed, EMBASE, Ovid, CINAHL and PsycINFO. Databases were searched from 2006 to 2016. Empirical, UK-based qualitative studies were included for analysis. Results: A total of 38 articles were included for analysis. Seven overarching barriers were identified: lack of knowledge, skills and support among informal carers and healthcare professionals; informal carer and family burden; recognising death; inadequacy of processes such as advance care planning and discharge; as well as inherent patient difficulties, either due to the condition or social circumstances. Four overarching facilitators were observed: support for patients and healthcare professionals, skilled staff, coordination and effective communication. Conclusion: Future policies and clinical practice should develop measures to empower informal carers as well as emphasise earlier commencement of advance care planning. Best practice discharge should be recommended in addition to addressing remaining inequity to enable non-cancer patients greater access to palliative care services. [ABSTRACT FROM AUTHOR]

Background: Deaths of people with intellectual disabilities are often unplanned for and poorly managed. Little is known about how to involve people with intellectual disabilities in end-of-life care planning. Aim: To explore the perspectives of people with intellectual disabilities, families, health and social care professionals and policy makers on end-of-life care planning within intellectual disability services. Design: A total of 11 focus groups and 1 semi-structured interview were analysed using qualitative framework and matrix analysis. The analysis was conducted inclusively with co-researchers with intellectual disabilities. Setting/participants: A total of 60 participants (14 people with intellectual disabilities, 9 family carers, 21 intellectual disability professionals, 8 healthcare professionals and 8 policy makers) from the UK. Results: There were differences in how end-of-life care planning was understood by stakeholder groups, covering four areas: funeral planning, illness planning, planning for living and talking about dying. This impacted when end-of-life care planning should happen and with whom. Participants agreed that end-of-life care planning was important, and most wanted to be involved, but in practice discussions were postponed. Barriers included issues with understanding, how or when to initiate the topic and a reluctance to talk about dying. Conclusions: To develop effective interventions and resources aiding end-of-life care planning with people with intellectual disabilities, clarity is needed around what is being planned for, with whom and when. Research and development are needed into supporting intellectual disability staff in end-of-life care planning conversations. Collaboration between intellectual disability staff and palliative care services may facilitate timely end-of-life care planning and thus optimal palliative end-of-life care. [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]

In this paper we review the challenges facing the delivery of research in end-of-life care in the UK and internationally as health policies begin to focus on improving care. These include the problems of terminology in this field of enquiry and the lack of emphasis on clinical studies relating to the medical aspects of end-of-life care, including research into pain and other symptoms. Future priorities are discussed that include the pressing need to build research capacity, making better use of existing intelligence, and to progress in incremental steps as part of sustained programmes of research. [ABSTRACT FROM AUTHOR]

Bereavement needs assessment for specialist palliative care services has been highlighted as important by NICE guidance on palliative care for adults with cancer. Identifying and implementing appropriate bereavement measurement tools has remained a challenge. This paper identifies and reviews bereavement measurement tools to determine their suitability for use within bereavement services and hospice settings. Cochrane, MEDLINE, PsycINFO and CINAHL, electronic databases were searched, yielding 486 papers. From fifty-nine full text papers appraised, 10 measurement tools were analysed in detail. Some tools had been tested on specific populations which limited transferability to specialist palliative care settings; some lacked adequate theoretical links and were not effective in discriminating between normal and complicated grief reactions; and some lacked clear evidence of validity or reliability. Based on these criteria, conclusions are drawn about the suitability of particular tools for UK bereavement services and hospice settings where intervention is delivered by both trained professionals and volunteers. [ABSTRACT FROM AUTHOR]

Hospice trustees are volunteers who are vital to the governance and management of independent, charitable hospices, yet little is known about their roles and concerns. This paper presents some findings from a qualitative study which explored the views and perspectives of hospice trustees in the UK. Twenty hospice trustees took part in semi-structured telephone interviews, which were analysed using an iterative thematic approach. Nine themes emerged from the analysis, and were grouped into two major categories. One theme, 'becoming a trustee', is presented in this paper to illustrate trustees' concerns about the challenges they face in adapting to change. The pace of change currently facing hospices in the UK is an issue of particular concern to trustees, presenting ongoing challenges for this group of volunteers. The study also raises wider questions about how hospices wish to position themselves in the future. [ABSTRACT FROM AUTHOR]

In June 1997 a postal questionnaire was sent to all palliative medicine trainees in the United Kingdom to ascertain the resources available to facilitate education and research, and the experiences of trainees who had undertaken research. Questions posed related to protected study time, library facilities, information technology (IT) support, postgraduate educational activities, details of research projects undertaken, level of senior supervision and overall impressions. The response rate was 85%. Thirty-six per cent of respondents were undertaking postgraduate educational courses and 30% of those remaining planned to do so. Protected time for study was allocated to almost all trainees, but access to educational resources was more variable. The availability of several journals and of information technology support was lower than their perceived importance. Satisfaction scores for the availability of books covering areas related to clinical practice were high, but were lower for availability of the Internet and of books covering specific training issues. Ninety-one per cent of respondents had been involved in research/audit projects, two-thirds had published at least one article and half had presented an oral or written paper. Details of 162 projects were received, together with problems encountered. The results indicate that many of the foundations for specialist education in palliative medicine are in place and that trainees are highly motivated towards conducting research. The aspects in need of improvement on the educational side include IT facilities and the availability of specific speciality related journals. There is a need for more accessible supervision from senior colleagues and training in research methodology. [ABSTRACT FROM AUTHOR]

The article focuses on evaluating the quality of reporting in palliative and end-of-life care intervention studies regarding social characteristics like socioeconomic position, race, religion, and main language of participants. Topics include the findings that a significant proportion of studies do not report these characteristics adequately, with a tendency to use broad categories that may not capture the diversity of participants, hindering efforts to address inequalities in palliative care.

Background: Social workers have a significant role in hospices working with clients who are facing death but there is limited detailed understanding of the emotional impact of this work on social workers. Research has highlighted that those involved in hospice work find the work both a struggle (e.g. because of heightened emotions) and rewarding (noting that end-of-life care can feel like a privilege). Aim: To explore UK hospice social workers' emotional experiences of work and how this influences their practice. Design: Semi-structured interviews were conducted with hospice social workers. Interviews were transcribed and transcripts were analysed using Interpretative Phenomenological Analysis. Setting/participants: Eight social workers from different hospices in the UK. Results: Five overlapping superordinate themes emerged: making a difference to clients and families ('the difference made'), the emotional impact of working in hospices ('dealing with people's emotions, and death, and dying, it's serious stuff'), the relational context of this type of work ('awareness of affinity to connect'), the ways in which coping is facilitated in hospices ('seen it coming') and a foundation theme, connection and disconnection to values ('(dis)connection to values'). Conclusions: The results offer an exploration of social workers' experiences of their work in hospices; how adept they were at coping and how they prepared for and made sense of the often emotionally-laden experiences encountered. Their experience of the rewards and meaning derived from their work offers important findings for clinical practice. Further research is suggested to explore a multitude of healthcare professionals' perspectives across country settings using Interpretative Phenomenological Analysis. [ABSTRACT FROM AUTHOR]

Background: Speech and language therapists can improve the quality of life of people receiving palliative care through the management of communication and swallowing difficulties (dysphagia). However, their role in this domain is poorly defined and little is understood about the current international professional practice in this field. Aims: To examine how speech and language therapists perceive their role in the delivery of palliative care to clients, to discover current international speech and language therapist practices and to explore the similarities and differences in speech and language therapists’ practice in palliative care internationally. This will inform professional clinical guidelines and practice in this area.Design:Anonymous, non-experimental, cross-sectional survey design.Participants:Speech and language therapists working with adult and paediatric palliative care populations in Republic of Ireland, United Kingdom, United States, Canada, Australia and New Zealand where the speech and language therapist profession is well established. Method: Purposive and snowball sampling were used to recruit participants internationally using gatekeepers. An online survey was disseminated using Survey Monkey (http://www.surveymonkey.com). Results: A total of 322 speech and language therapists responded to the survey. Speech and language therapist practices in palliative care were similar across continents. Current speech and language therapist practices along with barriers and facilitators to practice were identified. The need for a speech and language therapist professional position paper on this topic was emphasised by respondents. Conclusion: Internationally, speech and language therapists believe they have a role in palliative care. The speech and language therapist respondents highlighted that this area of practice is under-resourced, under-acknowledged and poorly developed. They highlighted the need for additional research as well as specialist training and education for speech and language therapists and other multidisciplinary team members in the area of palliative care. [ABSTRACT FROM AUTHOR]

Background: Healthcare usage patterns change for people with life limiting illness as death approaches, with increasing use of out-of-hours services. How best to provide care out of hours is unclear. Aim: To evaluate the effectiveness and effect of enhancements to 7-day specialist palliative care services, and to explore a range of perspectives on these enhanced services. Design: An exploratory longitudinal mixed-methods convergent design. This incorporated a quasi-experimental uncontrolled pre-post study using routine data, followed by semi-structured interviews with patients, family carers and health care professionals. Setting/participants: Data were collected within specialist palliative care services across two UK localities between 2018 and 2020. Routine data from 5601 unique individuals were analysed, with post-intervention interview data from patients (n = 19), family carers (n = 23) and health care professionals (n = 33; n = 33 time 1, n = 20 time 2). Results: The mean age of people receiving care was 73 years, predominantly white (90%) and with cancer (42%). There were trends for those in the intervention (enhanced care) period to stay in hospital 0.16 days fewer, but be hospitalised 2.67 more times. Females stayed almost 3.5 more days in the hospital, but were admitted 2.48 fewer times. People with cancer had shorter hospitalisations (4 days fewer), and had two fewer admission episodes. Themes from the qualitative data included responsiveness (of the service); reassurance; relationships; reciprocity (between patients, family carers and staff) and retention (of service staff). Conclusions: Enhanced seven-day services provide high quality integrated palliative care, with positive experiences for patients, carers and staff. [ABSTRACT FROM AUTHOR]

Background: Trial participant recruitment is an interactional process between health care professionals, patients and carers. Little is known about how clinicians carry out this role in palliative care trials and the reasons why they do or do not recruit participants. Aims: To explore how clinicians recruit to palliative care trials, why they choose to implement particular recruitment strategies, and the factors that influence their choices. Design: A qualitative multiple case study of three UK palliative care trials. Data collection included interviews and study documentation. Analysis involved developing and refining theoretical propositions, guided by the '6Ps' of the 'Social Marketing Mix Framework' as an a priori framework (identifying participants, product, price, place, promotion and working with partners). Framework Analysis guided within and then cross-case analysis. Settings/participants: Study investigators and research staff (n = 3, 9, 7) from trial coordinating centres and recruitment sites (hospice and hospital). Results: Cross-case analysis suggests the 'Social Marketing Mix Framework' is useful for understanding recruitment processes but wider contextual issues need to be incorporated. These include the 'emotional labour' of diagnosing dying and communicating palliative and end-of-life care to potential participants and how the recruitment process is influenced by the power relationships and hierarchies that exist among professional groups. These factors can lead to and support paternalistic practices. Conclusions: Those planning trials need to ensure that trial recruiters, depending on their experience and trial characteristics, have access to training and support to address the 'emotional labour' of recruitment. The type of training required requires further research. [ABSTRACT FROM AUTHOR]

The paper discusses a questionnaire survey that examined the attitudes, knowledge, practice, and experience of corneal donation of hospice staff with direct clinical contact with patients. Results revealed several barriers to discussing corneal donation, despite positive staff attitudes toward donation, which could reduce donation rates. It is noted that this could be improved through local policies for further education, prompts in documentation and availability of informative leaflets.

The article reports a study which examined literature evidence which exists on management of chronic cough in patients receiving palliative care. The review of the literature revealed 11 studies on management of chronic cough. Of these, only five provided levels of evidence of 2 or above; the remainder were case reports or case series. This indicates that there is very little evidence to support guidelines for the management of chronic cough in advanced, progressive disease.

This paper reports on undergraduate students’ evaluation of a new hospice-based interprofessional practice placement (IPP) that took place in the voluntary sector from 2008 to 2009. Ward-based interprofessional training has been successfully demonstrated in a range of clinical environments. However, the multidisciplinary setting within a hospice in-patient unit offered a new opportunity for interprofessional learning. The development and delivery of the IPP initiative is described, whereby multidisciplinary groups of 12 students provided hands-on care for a selected group of patients, under the supervision of trained health care professionals. The placement was positively evaluated and students reported an increased understanding of both their own role and that of other professionals in the team. The evaluation also suggests that additional learning opportunities were provided by the in-patient palliative care unit. The results of this evaluation suggest that the in-patient unit of a hospice caring for patients with life-limiting illness provides a suitable environment to demonstrate and learn about interprofessional practice. [ABSTRACT FROM PUBLISHER]

Background: Red blood cell transfusions are commonly used in palliative care to treat anaemia or symptoms caused by anaemia. In patients with advanced disease, there is little evidence of benefit to guide treatment decisions in the face of increased risk of harms. Aim: To determine national transfusion practice in hospices and compare this against National Institute for Health and Care Excellence and British Society of Haematology guidelines to develop recommendations to improve practice. Design and Setting: Prospective data collection on red blood cell transfusion practice in UK adult hospices over a 3-month census period. Results: A total of 121/210 (58%) hospices participated. A total of 465 transfusion episodes occurred in 83 hospices. Patients had a mean age of 71 years, and 96% had cancer. Mean pre-transfusion haemoglobin was 75 g/L (standard deviation = 11.15). Anaemia of chronic disease was the largest cause of anaemia (176; 38%); potentially amenable to alternative treatments. Haematinics were not checked in 70% of patients. Alternative treatments such as B12, folate and iron were rarely used. Despite transfusion-associated circulatory overload risk, 85% of patients were not weighed, and 84% had two or more units transfused. Only 83 (18%) patients had an improvement maintained at 30 days; 142 (31%) had <14 day improvement, and 50 (11%) had no improvement. A total of 150 patients (32%) were dead at 30 days. Conclusion: More rigorous investigation of anaemia, increased use of alternative therapies and more restrictive approach to red cell transfusions are recommended. Clinicians should discuss the limited benefit versus potentially higher risks with patients in hospice services to inform treatment decisions. [ABSTRACT FROM AUTHOR]

This study aimed to evaluate health professionals’ views about palliative care provision in prisons in the counties of Cumbria and Lancashire in the North West of England. Seventeen prison healthcare staff and nine specialist palliative care staff participated in semi-structured interviews and 16 prison healthcare staff completed a questionnaire designed to measure knowledge, skills and confidence in relation to palliative care. The findings highlighted tensions between the philosophies of care and custody, and the many challenges in providing palliative care in a custodial setting. This paper presents two illustrative case study examples, and suggests ways in which some of these challenges can be overcome in practice. [ABSTRACT FROM PUBLISHER]

This paper reports on data from the initial phase of a UK-wide study exploring life-limiting conditions (LLCs) in children where, because of their rarity, little is understood regarding the significant symptom challenges of families and care professionals who support them. In this initial phase, care professionals (n = 43) and families (n = 16) completed a survey to identify which rare LLCs present symptom challenges and which individual symptoms prove difficult to manage. Findings led to the prioritization of mucopolysaccharidoses, Batten Disease and leukodystrophy. Care professionals’ rationales for selecting these conditions included the presence of symptoms that are very difficult to manage, a requirement for additional clinical evidence to support symptom management, and the progressive nature of these diseases where symptoms frequently change and are difficult to predict. Families identified symptoms such as behavioural difficulties, visual impairments and communication impairments as those being most difficult to manage and having most impact on quality of life for children and families. [ABSTRACT FROM PUBLISHER]

In economically developed countries there is a rapidly increasing number of older people living and dying in care homes. The relative isolation of nursing care homes from the development of palliative care, the poor retention and recruitment of staff, and the lack of medical cover, hinder the provision of quality end-of-life care. End-of-life care strategies internationally highlight the benefit of using tools to help improve end-of-life care in care homes. All seven private nursing care homes within one district in Scotland undertook to implement, as a package, two end-of-life care tools, namely, the Gold Standards Framework for Care Homes (GSFCH) and an adapted Liverpool Care Pathway for Care Homes (LCP). A model of high facilitation, visiting the homes every 10—14 days with significant in-house staff training, was used to implement the 18-month programme. The notes of 228 residents who had died prior to and during the project were examined, alongside a staff audit looking at the effect that the project had on practice. A nurse researcher undertook qualitative interviews of bereaved relatives, pre-/post-implementation. This paper reports the results of an in-depth evaluation of professional practices and residents outcomes. There was a highly statistically significant increase in use of Do Not Attempt Resuscitation (DNAR) documentation, advance care planning and use of the LCP. An apparent reduction in unnecessary hospital admissions and a reduction in hospital deaths from 15% deaths pre-study to 8% deaths post-study were also found. Further work is needed to assess the optimum input required for successful implementation. [ABSTRACT FROM PUBLISHER]

Background: Providing good quality of care for dying patients and their families has been highlighted as a national priority in the UK. Defining and measuring the quality of this care is therefore important. Using the views of patients has practical and ethical difficulties, so an alternative approach is to seek the views of bereaved relatives and close friends after the patients' death. Aim: To identify and critically appraise instruments previously used with bereaved relatives to measure the quality of care for dying patients and the level of support provided to the family. Methods: A literature review was undertaken using Medline, Cinahl, Embase and AMED databases from 1985 to 2005. The search strategy was based on the following headings: quality of care, dying, assessment and relatives. Key criteria were set for the appraisal of each instrument. Results: Analysis of the 229 articles identified from the searches, yielded seven instruments used with bereaved relatives to assess the quality of 'care for the dying'. Discussion: Each of these instruments was carefully constructed and all but one had clear documentation of validity and reliability measures. Two instruments used 'satisfaction' as an outcome measure, limiting their ability to discriminate between adequate and excellent care. Only one instrument was developed in the UK making it more 'user-friendly' for direct use in the UK. Conclusion: None of the instruments in their current format could comprehensively evaluate 'care for the dying' in the UK healthcare setting. We would propose to develop and validate a tool specifically assigned for this purpose. [ABSTRACT FROM AUTHOR]

In the context of an increased national policy focus on the development of palliative and end of life care services the post of a GP with a special interest in palliative medicine (GPSI) was introduced in one region of the UK to fortify its current palliative care provision. This paper presents findings from an evaluation of the first 2 years of the GPSI post. A mixed method evaluation design was adopted incorporating qualitative interviews, a satisfaction survey and an activity log. As a concept, the GPSI was welcomed as a suitable and imaginative way to provide much needed medical input. At baseline interviews stakeholders saw the role as an added resource both clinically and educationally, placing highest value on the clinical element of the role. There were concerns related to referral practices (referral was via a GP only) as well as the low profile of the new role. At the final stage of the evaluation, almost 2 years since the role began, stakeholders noted that the use of the GPSI for informal advice and support was highly valued, but also noted that more had been expected, particularly in relation to increased clinical input. The evaluation contained important lessons both for the continuation of this GPSI post and for other regions considering appointing a GPSI in this speciality. [ABSTRACT FROM AUTHOR]

The Assisted Dying for the Terminally Ill Bill proposed to legalise both euthanasia and physician-assisted suicide for those with a terminal illness in the UK. A House of Lords Select Committee was convened to scrutinise this Bill and has recently published its report, which will be debated in Parliament on October 10th 2005. The written and oral evidence submitted to the Select Committee represented a wide range of views on 'assisted dying'. Much of the evidence from those countries which have legalised euthanasia/physician-assisted suicide (The Netherlands, Belgium, Switzerland and Oregon, USA) dealt with the practicalities of ending life, and the legal procedures and safeguards instigated in these countries. All the written and oral evidence in the public domain was scrutinised by the authors whilst the Select Committee was sitting. We have extracted those themes relevant to specialist palliative care practice and present them in this paper. We hope that this will provide a useful resource to inform the forthcoming public debate on assisted dying. The evidence of harms inherent in making such a change in the law, as presented to the Select Committee, has moved all three authors to oppose a change in the law. [ABSTRACT FROM AUTHOR]

One of the major reasons for admission of patients to hospital in late stage disease is the inability of carers to continue to provide care at home. Specialist palliative care services have typically admitted patients for acute symptom control, terminal care and respite care to benefit them and their carers. This paper reports the results of a cross-sectional survey of inpatient respite care provision provided by specialist palliative care services and hospices in the UK. A structured questionnaire was mailed to 242 clinical services managers listed in the Hospice Information Directory in 2003. A 69% response rate was achieved. The questionnaire explored the nature of respite services, their purpose, organization, delivery and examined definitions used. The analysis indicated that 80% of the sample provided inpatient respite care. Most inpatient respite admissions were planned, of fixed duration (7-14 days) and were intended to benefit patients and carers. There was some evidence that respite provision was regarded as a lower priority than admissions for symptom control and terminal care, and that patients' needs were prioritized over those of carers. Only 10% of services conducted regular, routine audit, with very few seeking the views of service users. Findings suggest that carers' needs and wishes are not prioritized by specialist palliative care services offering inpatient respite, which may mean that they find it difficult to maintain their caregiving roles over longer disease trajectories or in the face of overwhelming demands. [ABSTRACT FROM AUTHOR]

In the UK, researchers' access to study populations and control over selection of participants is becoming increasingly constrained by data protection and research governance legislation. Intervening stages placed between researchers and the population they wish to study can have serious effects on recruitment and ultimately on the validity of studies. In this paper we describe our experiences of gaining access to patients for a study of palliative care in primary care. Despite considerable time and resources dedicated to recruitment, a smaller than anticipated study sample was achieved. We found that gatekeeping by ethics committees and practitioner control over sample selection were significant hurdles in accessing patients for the study. Gatekeeping responsibilities represent considerable challenges for researchers seeking to obtain a representative study sample, not just in palliative care, but for research in general in health care. [ABSTRACT FROM AUTHOR]

Macmillan Nurses play a significant role in specialist palliative care services in the UK, providing direct and indirect services to patients with complex palliative care needs and to their families. Existing literature shows a developing understanding of the role; however, little detailed data exist regarding the clinical work that they undertake. This paper provides evidence from a major evaluation study, commissioned by Macmillan Cancer Relief. It reports the methods of data collection for the study and then goes on to use data from the evaluation to describe the caseload of Macmillan Nurses. Between September 1998 and October 1999, a team of researchers worked alongside 12 Macmillan teams for a period of 8 weeks with each team. Prospective data were gathered on all new referrals to the services within the 8-week period. This included demographic details, timing of referral, the nature and purpose of contacts, and interventions, recorded from case notes and Macmillan Nurse records. Where possible, a date of death was obtained for all patients. A total of 814 new patients were referred during the study period (range 45-114 per site). The most common reasons for referral were emotional care for the patient (57%), pain control (27%), and other physical symptoms (33%). Thirteen per cent of the patients referred to the services died within 1 week of referral while 40% died within 6 weeks; thus, a significant proportion of patient work is focused on care at the end of life. It is also noteworthy that one-third of patients were still alive, indicating that some patients are being cared for earlier in the illness trajectory. On average, each new patient referral received two or more 'face-to-face' visits and two follow-up phone calls within the 8-week period. It would appear that Macmillan Nurse teams have been successful in getting access to relevant patients. As with any service that provides a complex set of interventions, the Macmillan teams have to adapt and develop the services in each setting. Whilst it is clearly important for the development of a Macmillan service to be tailored to the local conditions, the evidence on diversity suggests that in some cases, stronger guidance, in partnership with both Macmillan Cancer Relief and core providers, may be justified. [ABSTRACT FROM AUTHOR]

Effective delivery of high-quality palliative care requires effective interprofessional teamworking by skilled health and social care professionals. Palliative care is therefore highly suitable for sowing the seeds of interprofessional teamworking in early professional education. This paper describes experiences of running undergraduate interprofessional workshops in palliative care for medical, nursing, social work, physiotherapy and occupational therapy students. These workshops are unusual in three respects: first, the involvement of family carers mean that these learning experiences are rooted in clinical reality; secondly, there is no attempt to 'tidy up' the story for the students; thirdly, unlike many undergraduate interprofessional programmes, these workshops have been sustained over several years. Evaluation of these workshops demonstrate that students value and enjoy the opportunity to work together; they find the experience moving, informative and interesting. Feedback from carers showed that they appreciated the opportunity to present their real-life experiences to students. Our evidence suggests that palliative care is a suitable subject for undergraduate interprofessional education. [ABSTRACT FROM AUTHOR]

Abstract: Recent technological advances and reducing costs have meant that videoconferencing is a possible new medium for health-care teams. The IMPaCT (Interactive Multimedia Palliative Care Training) project began in 1997 with the aims of assessing the practicalities of videoconferencing in palliative care and assessing its educational effectiveness. The use of videoconferencing was closely evaluated during the first 2 years of the project and this paper presents the results of that monitoring. Twenty-two sites were linked worldwide, reaching 136 professionals without the costs or time needed to travel. The savings on travel and time within the UK alone would have paid for the equipment in 1 year. Sites only continued with videoconferencing if they reached a point where their organization saw the advantages of videoconferencing. Links were easy to establish and rarely failed regardless of distance. Users rapidly adapted to the new medium, and links could be used in a variety of settings and audiences, including journal clubs and expert workshops. Videoconferencing offers a new and unique way of supporting palliative care professionals while reducing time and costs for both tutors and learners. [ABSTRACT FROM AUTHOR]

Abstract: The aim of this paper was to examine the use of palliative care services by members of black/minority ethnic communities. Referral patterns of hospital consultants and general practitioners (GPs) to Birmingham St Mary’s Hospice were examined. Semistructured interviews were carried out to explore doctors’ perceptions of the benefits and limitations of hospice services for their black/minority ethnic patients and to identify potential barriers to referral. In total, 27 doctors were interviewed: 15 hospital consultants and 12 GP. The GPs were selected according to size of practice within areas of Birmingham with significant black/minority ethnic populations. Referrals received by the hospice for the period April 1996 to November 1997 were collected from the Hospice’s computerized database. Results show that, compared to white Europeans, there was an underutilization of day care and inpatient hospice services by members of black/minority ethnic communities. Doctors did, however, refer their black/minority ethnic patients for hospice home-care services: 8.5% of referrals received by the hospice were for nonwhite patients. This referral rate increased to 19.3% in specific postcode areas known to have significant black/minority ethnic communities. Further research is needed to establish levels of awareness, explore attitudes towards palliative care services and assess the demand for specific services within various black/minority ethnic communities. [ABSTRACT FROM AUTHOR]

Background: Healthcare assistants working in hospice at home settings have a pivotal role in supporting people dying at home and their family caregivers. Some healthcare assistants are working alone in patients' homes, which magnifies some of the issues reported for those working closely with other team members. There is a dearth of evidence in terms of education, training and support needs for healthcare assistants when working alone. Aim: To explore the role of newly employed lone working healthcare assistants delivering palliative care in the community, and their support and educational needs. Design: Qualitative exploratory study using semi-structured interviews. Setting/participants: Healthcare assistants (n = 16) employed less than 12 months by a national non-profit hospice and palliative care provider located across the UK. Results: Analysis of interviews identified three main themes: (1) Healthcare assistants have a unique and complex role catering for holistic needs of patients and their family caregivers in the home environment; (2) preparation for the complex role requires focus on experiential learning and specific training to support holistic care provision; (3) lone workers experience loneliness and isolation and identify peer support as a key intervention to support their wellbeing. Conclusions: Given the complexities of their role within community palliative care teams, there are key learning points in relation to healthcare assistant preparation. Education and support networks should be prioritised to reduce isolation and support ongoing learning and development of newly employed healthcare assistants; all of which is vital to ensure safety and quality of care for the growing number of people they support in the community. [ABSTRACT FROM AUTHOR]

Background: Young men with Duchenne Muscular Dystrophy benefit from palliative care that supports their psychosocial needs. Acknowledging the sub-cultures they engage with can support their wellbeing. Anecdotal reports suggest video gaming is a sub-culture engaged with by young men with Duchenne Muscular Dystrophy. Aim: To explore the lived experience of video gaming from the perspective of young men with Duchenne Muscular Dystrophy. Design: Interpretative Phenomenological Analysis approach involving in-depth interviews using a topic guide that focused on social media broadly, with reference to video gaming. Sequential interviewing was undertaken to support participation regarding fatigue and tiredness, symptoms of Duchenne Muscular Dystrophy. Setting/participants: Participants were purposefully recruited from a hospice in the North of England. Twitter was used to support recruitment. Eight young men with Duchenne Muscular Dystrophy were recruited to the study. Results: Five themes were developed; 'gamer as a shared and accepted identity', 'an existential and bodily escapism', 'introspection through video gaming', 'video gaming as a release' and 'when life gives you few choices-video game'. Motivations for engagement with video gaming are diverse and reflective of the situated perspectives of young men with Duchenne Muscular Dystrophy. Conclusions: An awareness of the popular sub-cultures that young men with Duchenne Muscular Dystrophy engage with is key to building a therapeutic alliance, establishing rapport and recognising personhood in interactions between professionals and persons in palliative care settings. This study highlights the value of video gaming, offering professionals valuable insight into its placement in the daily lives of young men with Duchenne Muscular Dystrophy. [ABSTRACT FROM AUTHOR]

Background: Despite being a core domain of palliative care, primary data on spiritual and existential concerns has rarely been collected among children with life-limiting and life-threatening conditions and their families. Existing evidence has tended to focus on the religious aspects among children with cancer. Aim: To identify the spiritual needs of children with life-limiting and life-threatening conditions. Design: Cross-sectional semi-structured, qualitative interview study with children, families and health and social care professionals. Verbatim transcripts were analysed using Framework analysis Setting/participants: Purposively sampled children with life-limiting and life-threatening conditions, their parents and siblings, health and social care professionals recruited from six hospitals and three children's hospices in the UK, and commissioners of paediatric palliative care services recruited through networks and a national charity. Results: One hundred six participants were interviewed: 26 children (5–17 years), 53 family members (parents/carers of children 0–17 years and siblings (5–17 years)), 27 professionals (health and social care professionals and commissioners of paediatric palliative care). Themes included: living life to the fullest, meaning of life and leaving a legacy, uncertainty about the future, determination to survive, accepting or fighting the future and role of religion. Children as young as 5 years old identified needs or concerns in the spiritual domain of care. Conclusions: Addressing spiritual concerns is essential to providing child- and family-centred palliative care. Eliciting spiritual concerns may enable health and social care professionals to identify the things that can support and enhance a meaningful life and legacy for children and their families. [ABSTRACT FROM AUTHOR]

Background: The optimal management of diminishing drinking at the end of life is contentious. Clinicians and family members may understand the phenomenon differently and hold divergent priorities regarding care. Family members can be distressed by diminishing drinking and its management, particularly when in a hospital environment. Aim: To explore the experiences of family members when witnessing the diminishing drinking of a dying relative. Design: A narrative inquiry methodology, derived from pragmatism. Setting and participants: Thirteen recently bereaved family members were recruited through the bereavement services of three UK hospitals. Inclusion criteria included having an adult relative who died in hospital of any diagnosis more than 48 hours from admission and who had had noticeable diminishing drinking. Findings: Participants experienced diminishing drinking as an unfolding process that was part of overall decline. They all believed it to be detrimental. Three groups of responses were identified: promoting, accepting and ameliorating. Supportive measures included offering equipment to support drinking, staff being present and communicating about expectations and care management aims. Conclusions: There is potential to improve family members' experiences through re-conceptualisation of diminishing drinking aligned to their experiences, supporting family members by listening to their experiences with insight and strengthening their agency within the management of their relatives with diminishing drinking. [ABSTRACT FROM AUTHOR]

Background: People who use drugs with life-limiting illnesses experience substantial barriers to accessing palliative care. Demand for palliative care is expected to increase during communicable disease epidemics and pandemics. Understanding how epidemics and pandemics affect palliative care for people who use drugs is important from a service delivery perspective and for reducing population health inequities. Aim: To explore what is known about communicable disease epidemics and pandemics, palliative care, and people who use drugs. Design: Scoping review. Data sources: We searched six bibliographic databases from inception to April 2021 as well as the grey literature. We included English and French records about palliative care access, programs, and policies and guidelines for people ⩾18 years old who use drugs during communicable disease epidemics and pandemics. Results: Forty-four articles were included in our analysis. We identified limited knowledge about palliative care for people who use drugs during epidemics and pandemics other than HIV/AIDS. Through our thematic synthesis of the records, we generated the following themes: enablers and barriers to access, organizational barriers, structural inequity, access to opioids and other psychoactive substances, and stigma. Conclusions: Our findings underscore the need for further research about how best to provide palliative care for people who use drugs during epidemics and pandemics. We suggest four ways that health systems can be better prepared to help alleviate the structural barriers that limit access as well as support the provision of high-quality palliative care during future epidemics and pandemics. [ABSTRACT FROM AUTHOR]

Background: Voluntary and community sector bereavement services are central to bereavement support in the UK. Aim: To determine service providers' perspectives on access to their support before and during the COVID-19 pandemic. Design: Mixed methods study using an explanatory sequential design: (1) Cross-sectional online survey of UK bereavement services; (2) Qualitative interviews with staff and volunteers at selected services. Settings/participants: 147 services participated in the survey; 24 interviews were conducted across 14 services. Results: 67.3% of services reported there were groups with unmet needs not accessing their services before the pandemic; most frequently people from minoritised ethnic communities (49%), sexual minority groups (26.5%), deprived areas (24.5%) and men (23.8%). Compared with before the pandemic, 3.4% of services were seeing more people from minoritised ethnic groups, while 6.1% were seeing fewer. 25.2% of services did not collect ethnicity data. Qualitative findings demonstrated the disproportionate impact of the pandemic on minoritised ethnic communities, including disruption to care/mourning practices, and the need for culturally appropriate support. During the pandemic outreach activities were sometimes deprioritised; however, increased collaboration was also reported. Online provision improved access but excluded some. Positive interventions to increase equity included collecting client demographic data; improving outreach, language accessibility and staff representation; supporting other professionals to provide bereavement support; local collaboration and co-production. Conclusions: Service providers report inequities in access to bereavement support. Attention needs to be paid to identifying, assessing and meeting unmet needs for appropriate bereavement support. Identified positive interventions can inform service provision and research. [ABSTRACT FROM AUTHOR]

Background: Palliative medicine physicians may be at higher risk of burnout due to increased stressors and compromised resilience during the COVID-19 pandemic. Burnout prevalence and factors influencing this among UK and Irish palliative medicine physicians is unknown. Aim: To determine the prevalence of burnout and the degree of resilience among UK and Irish palliative medicine physicians during the COVID-19 pandemic, and associated factors. Design: Online survey using validated assessment scales assessed burnout and resilience: The Maslach Burnout Inventory Human Services Survey for Medical Personnel [MBI-HSS (MP)] and the Connor-Davidson Resilience Scale (CD-RISC). Additional tools assessed depressive symptoms, alcohol use, and quality of life. Setting/participants: Association of Palliative Medicine of UK and Ireland members actively practising in hospital, hospice or community settings. Results: There were 544 respondents from the 815 eligible participants (66.8%), 462 provided complete MBI-HSS (MP) data and were analysed. Of those 181/462 (39.2%) met burnout criteria, based on high emotional exhaustion or depersonalisation subscales of the MBI-HSS (MP). A reduced odds of burnout was observed among physicians who worked ⩽20 h/week (vs 31–40 h/week, adjusted odds ratio (aOR) 0.03, 95% confidence interval (CI) 0.002–0.56) and who had a greater perceived level of clinical support (aOR 0.70, 95% CI 0.62–0.80). Physicians with higher levels of depressive symptoms had higher odds of burnout (aOR 18.32, 95% CI 6.75–49.73). Resilience, mean (SD) CD-RISC score, was lower in physicians who met burnout criteria compared to those who did not (62.6 (11.1) vs 70.0 (11.3); p < 0.001). Conclusions: Over one-third of palliative medicine physicians meet burnout criteria. The provision of enhanced organisational and colleague support is paramount in both the current and future pandemics. [ABSTRACT FROM AUTHOR]

Background: The need for end-of-life care in the community increased significantly during the COVID-19 pandemic. Primary care services, including general practitioners and community nurses, had a critical role in providing such care, rapidly changing their working practices to meet demand. Little is known about primary care responses to a major change in place of care towards the end of life, or the implications for future end-of-life care services. Aim: To gather general practitioner and community nurse perspectives on factors that facilitated community end-of-life care during the COVID-19 pandemic, and to use this to develop recommendations to improve future delivery of end-of-life care. Design: Qualitative interview study with thematic analysis, followed by refinement of themes and recommendations in consultation with an expert advisory group. Participants: General practitioners (n = 8) and community nurses (n = 17) working in primary care in the UK. Results: General practitioner and community nurse perspectives on factors critical to sustaining community end-of-life care were identified under three themes: (1) partnership working is key, (2) care planning for end-of-life needs improvement, and (3) importance of the physical presence of primary care professionals. Drawing on participants' experiences and behaviour change theory, recommendations are proposed to improve end-of-life care in primary care. Conclusions: To sustain and embed positive change, an increased policy focus on primary care in end-of-life care is required. Targeted interventions developed during COVID-19, including online team meetings and education, new prescribing systems and unified guidance, could increase capacity and capability of the primary care workforce to deliver community end-of-life care. [ABSTRACT FROM AUTHOR]

Background: People with dementia and their caregivers often lack equitable access to hospice care which is a concern internationally. Domains of best practice in palliative care for this population exist and hospices are urged to become dementia friendly. Aim: This study aimed to evaluate the model of 'Hospice Enabled Dementia Partnership' mapped to international domains of best practice. Design: Three-phased monitoring, group interview and individual interview study using a formative evaluation framework. Setting / Participants: The partnership model was a collaboration between a large specialist palliative care hospice, a dementia charity and a Health Care Trust in the United Kingdom. Service documents were subjected to documentary review of monitoring activity and key indicators of service success. Group interviews and individual interviews took place with family carers (n = 12), health care professionals involved in delivering the service (n = 32) and senior professionals (n = 5) responsible for service commissioning in palliative or dementia care. Results: One hundred people with dementia were referred to the service between May 2016 and December 2017. Thirty-eight of the 42 people who died, achieved their preferred place of care and died at home. Four themes were derived from the data 'Impact of Dementia', 'Value of the Service', 'Information and Learning Needs' and 'Working in Partnership'. Conclusions: Positive outcomes resulted from this best practice model; achievement of preferred place of care and death at home, dual benefits of therapies for patients and families and partnership in cross working and learning between services. Replication of this model should be considered internationally. [ABSTRACT FROM AUTHOR]

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. [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]

The article presents information on a study conducted to identify, appraise and synthesise the challenges in palliative care for non-cancer patients. A total of 30 studies were included with views of 719 patients, 605 carers as well as over 400 professionals. It is concluded that effective interprofessional work is needed to maintain coordinated care for better palliative care provision for non-cancer patients.

Background: Family caregivers provide the majority of palliative care. The impact of family caregiving on employment and finances has received little research attention in the field of palliative care. Aim: The aim of this study was to explore perspectives and experiences of combining paid employment with palliative care family caregiving, and to assess the availability and suitability of employment support across three countries – the United Kingdom (UK), Aotearoa New Zealand and Canada. Design: A qualitative descriptive study design was used. Semi-structured interviews were held with 30 key informants with professional or personal experience in palliative care from the UK (n = 15), Aotearoa New Zealand (n = 6) and Canada (n = 9). Interviews were recorded, transcribed and analysed using the principles of thematic analysis. Results: Four main themes were identified: (1) significant changes to working practices are required to enable end of life family carers to remain in work; (2) the negative consequences of combining caregiving and employment are significant, for both patient and carer; (3) employer support for working end of life caregivers is crucial but variable and; (4) national, federal and government benefits for working end of life family carers are necessary. Conclusion: Supporting carers to retain employment whilst providing care has potential benefits for the patient at end of life, the caregiver, and the wider economy and labour market. Employers, policymakers and governments have a role to play in developing and implementing policies to support working carers to remain in employment. [ABSTRACT FROM AUTHOR]

Background: There is growing recognition of a need for community capacity development around serious illness, dying and loss, complementary to strategies focussing on health services. Hitherto, little is known about how and to what extent palliative care services in different countries are adopting these ideas in their practices. Aim: To examine views towards and actual involvement in community engagement activities as reported by specialized palliative care services in Belgium, Sweden and the UK. Design, setting, participants: Cross-sectional survey among all eligible specialized palliative care services in Flanders (Belgium) (n = 50), Sweden (n = 129) and the UK (n = 245). Representatives of these services were invited to complete an online questionnaire about their actual activities with the general public and their attitudes regarding such activities. Results: Response rates were 90% (Belgium), 71% (Sweden) and 49% (UK). UK services more often reported engaging with the general public to develop knowledge and skills through a range of activities (80%–90%) compared to Belgian (31%–71%) and Swedish services (19%–38%). Based on a combination of engagement activities 74% of UK services could be labelled as extending their focus beyond the clinical mandate compared to 16% in Belgium and 7% in Sweden. Services' dependency on charitable donations was strongly associated with increased engagement with the general public. Conclusion: An expansion of the mandate of specialized palliative care services beyond a traditional clinically-oriented focus towards one inclusive of community capacity building around serious illness, dying and loss is occurring in different countries, albeit to different degrees and with different intensities. [ABSTRACT FROM AUTHOR]

Background: Globally, pioneers in children's palliative care influenced this speciality's development through individual initiatives leading to diverse models of care. Children's and young adults' hospices have now been established around the world. However, service provision varies widely leading to inequities both within countries and internationally. Aim: To describe and classify existing approaches to paediatric palliative medicine in children's and young adults' hospices across the UK. Design: A mixed methods study conducted by telephone interview. Setting/participants: Thirty-one leaders of children's hospice care, representing 28 services, 66% of UK children's and young adults' hospice organisations. Results: A geographic-specialist classification was developed through integration of findings, enabling hospices to be classified as Regional specialist, Regional non-specialist, Local specialist and Local non-specialist. Both qualitative and quantitative data demonstrated diversity and inequity in paediatric palliative medicine provision. Of 159 doctors (63.5% of whom were general practitioners) working in participating hospices only 27.5% had specialist training in paediatric palliative medicine. The majority of participating hospices (67.9%) did not have involvement from a paediatric palliative medicine consultant. Conclusions: Internationally, the integration of specialist children's palliative care teams with existing services is a current challenge. Despite differing approaches to children's palliative care world-wide, models of care which facilitate integration of specialist children's palliative care could benefit a range of countries and contexts. The geographic-specialist classification could be used to inform recommendations for a networked approach to paediatric palliative medicine within children's and young adults' hospices to promote equity for children with life-limiting and life-threatening conditions. [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: Much palliative care provision relies on the support of volunteers. Attention is paid to the risks to professionals providing care, such as stress and burnout, but understanding if this is an issue for volunteers is little understood. It is important to understand the impact their role has on volunteers emotional well-being. Aim: To explore the experiences of palliative care volunteers and how the role impacted on their emotional well-being. Design: Interpretative phenomenological analysis, with data collected through semi-structured interviews. Setting/participants: Volunteers in patient-facing roles within palliative and end-of-life care services in the UK. Results: Volunteers (n = 10) across three palliative and end-of-life care services. Four themes were developed: (1) it can be challenging; (2) it's where I'm meant to be; (3) managing death; (4) the importance of connection. Challenges included frustrations and questioning themselves. Although difficult at times, volunteers expressed the importance of the role, doing well and that they benefitted too. They also had to manage death and discussed beliefs about life and death, acceptance and managing patients' fears. Connection with the hospice, patients, staff and other volunteers was important, with a need for everyone to feel valued. Conclusions: Although there are psychosocial benefits for volunteers in their role, it is important to understand the challenges faced and consider ongoing support to help volunteers manage these challenges. This could be addressed through the consideration of coping mechanisms, further training and reflective practice for volunteers. [ABSTRACT FROM AUTHOR]

Background: Primary healthcare teams (general practice and community nursing services) within the United Kingdom provided the majority of community end-of-life care during COVID-19, alongside specialist palliative care services. As international healthcare systems move to a period of restoration following the first phases of the pandemic, the impact of rapidly-implemented service changes and innovations across primary and specialist palliative care services must be understood. Aim: To provide detailed insights and understanding into service changes and innovation that occurred in UK primary care to deliver end-of-life care during the first phase of the COVID-19 pandemic. Design: Cross-sectional online survey. Responses were analysed using descriptive statistics and thematic analysis. Setting/participants: United Kingdom survey of general practitioners and community nurses, circulated via regional and national professional networks. Results: A total of 559 valid responses were received from 387 community nurses, 156 general practitioners and 16 'other'. Over a third of respondents (n = 224; 40.8%) experienced changes in the organisation of their team in order to provide end-of-life care in response to the COVID-19 pandemic. Three qualitative themes were identified: COVID-19 as a catalyst for change in primary palliative care; new opportunities for more responsive and technological ways of working; and pandemic factors that improved and strengthened interprofessional collaboration. Conclusion: Opportunity has arisen to incorporate cross-boundary service changes and innovations, implemented rapidly at the time of crisis, into future service delivery. Future research should focus on which service changes and innovations provide the most benefits, who for and how, within the context of increased patient need and complexity. [ABSTRACT FROM AUTHOR]

Background: The Surprise Question ('Would I be surprised if this patient died within 12 months?') identifies patients in the last year of life. It is unclear if 'surprised' means the same for each clinician, and whether their responses are internally consistent. Aim: To determine the consistency with which the Surprise Question is used. Design: A cross-sectional online study of participants located in Belgium, Germany, Italy, The Netherlands, Switzerland and UK. Participants completed 20 hypothetical patient summaries ('vignettes'). Primary outcome measure: continuous estimate of probability of death within 12 months (0% [certain survival]–100% [certain death]). A threshold (probability estimate above which Surprise Question responses were consistently 'no') and an inconsistency range (range of probability estimates where respondents vacillated between responses) were calculated. Univariable and multivariable linear regression explored differences in consistency. Trial registration: NCT03697213. Setting/participants: Registered General Practitioners (GPs). Of the 307 GPs who started the study, 250 completed 15 or more vignettes. Results: Participants had a consistency threshold of 49.8% (SD 22.7) and inconsistency range of 17% (SD 22.4). Italy had a significantly higher threshold than other countries (p = 0.002). There was also a difference in threshold levels depending on age of clinician, for every yearly increase, participants had a higher threshold. There was no difference in inconsistency between countries (p = 0.53). Conclusions: There is variation between clinicians regarding the use of the Surprise Question. Over half of GPs were not internally consistent in their responses to the Surprise Question. Future research with standardised terms and real patients is warranted. [ABSTRACT FROM AUTHOR]

The article discusses a literature review that explores how perceptions of risk may inform decision-making processes at end-of-life. The review identifies the growing international emphasis on tools with which to facilitate decision-making and states that the tools must provide diversity of service users and carers. The review emphasizes on recognizing perceived risks as a central factor in decision-making processes for patients with palliative care needs and their families.