Anticipatory prescribing in community end-of-life care: systematic review and narrative synthesis of the evidence since 2017.

BACKGROUND: The anticipatory prescribing of injectable medications is recommended practice in controlling distressing symptoms in the last days of life. A 2017 systematic review found practice and guidance was based on inadequate evidence. Since then, there has been considerable additional research, warranting a new review. AIM: To review the evidence published since 2017 concerning anticipatory prescribing of injectable medications for adults at the end-of-life in the community, to inform practice and guidance. DESIGN: Systematic review and narrative synthesis. METHODS: Nine literature databases were searched from May 2017 to March 2022, alongside reference, citation and journal hand-searches. Gough's Weight of Evidence framework was used to appraise included studies. RESULTS: Twenty-eight papers were included in the synthesis. Evidence published since 2017 shows that standardised prescribing of four medications for anticipated symptoms is commonplace in the UK; evidence of practices in other countries is limited. There is limited data on how often medications are administered in the community. Prescriptions are 'accepted' by family caregivers despite inadequate explanations and they generally appreciate having access to medications. Robust evidence of the clinical and cost-effectiveness of anticipatory prescribing remains absent. CONCLUSION: The evidence underpinning anticipatory prescribing practice and policy remains based primarily on healthcare professionals' perceptions that the intervention is reassuring, provides effective, timely symptom relief in the community and prevents crisis hospital admissions. There is still inadequate evidence regarding optimal medications and dose ranges, and the effectiveness of these prescriptions. Patient and family caregiver experiences of anticipatory prescriptions warrant urgent investigation. PROSPERO REGISTRATION: CRD42016052108.

Deaths at home, area-based deprivation and the effect of the Covid-19 pandemic: An analysis of mortality data across four nations.

BACKGROUND: The number and proportion of home deaths in the UK increased during the Covid-19 pandemic. It is not known whether these changes were experienced disproportionately by people from different socioeconomic groups. AIM: To examine the association between home death and socioeconomic position during the Covid-19 pandemic, and how this changed between 2019 and 2020. DESIGN: Retrospective cohort study using population-based individual-level mortality data. SETTING/PARTICIPANTS: All registered deaths in England, Wales, Scotland and Northern Ireland. The proportion of home deaths between 28th March and 31st December 2020 was compared with the same period in 2019. We used Poisson regression models to evaluate the association between decedent's area-based level of deprivation and risk of home death, as well as the interaction between deprivation and year of death, for each nation separately. RESULTS: Between the 28th March and 31st December 2020, 409,718 deaths were recorded in England, 46,372 in Scotland, 26,410 in Wales and 13,404 in Northern Ireland. All four nations showed an increase in the adjusted proportion of home deaths between 2019 and 2020, ranging from 21 to 28%. This increase was lowest for people living in the most deprived areas in all nations, with evidence of a deprivation gradient in England. CONCLUSIONS: The Covid-19 pandemic exacerbated a previously described socioeconomic inequality in place of death in the UK. Further research to understand the reasons for this change and if this inequality has been sustained is needed.

Palliative and end of life care teaching during the COVID-19 pandemic – what can we learn?

BackgroundThe COVID-19 pandemic caused far-reaching disruption and medical education had to rapidly adapt to overcome the many challenges. Palliative and end of life care (PEOLC) is a core competency for all UK graduating medical students, and may involve emotionally confronting topics requiring great care during teaching sessions, which is potentially difficult in a virtual environment. The ability of medical schools to foster experiential PEOLC learning may also have been impacted. However, the pandemic may have been a catalyst for some positive changes in PEOLC teaching too. Questions relating to the pandemic were included as part of a larger national survey of PEOLC teaching.MethodAn anonymised web-based 46-item questionnaire was sent to the PEOLC Teaching Lead(s) at 35 UK medical schools. 12 items related to adaptations to teaching during the COVID-19 pandemic.ResultsResponses received from 31 schools. Previously popular teaching methods, such as lectures and seminars/small group discussions, were newly introduced in an online format in 94% and 87% of medical schools respectively. Utilisation of e-learning increased from 59% to 84%. Other newly introduced teaching methods included: telemedicine, podcasts, augmented reality, virtual reality, and virtual ward rounds. Use of experience in clinical areas as a teaching method decreased from 100% to 68% of medical schools. In 30% of schools, assessments were no longer in-person. 40% of participants declared that they had developed novel teaching methods or resources during the pandemic, mostly relating to technology enhanced learning or simulation. Many participants shared the opinion that the increased use of online resources and pre-recorded sessions will persist after the pandemic.ConclusionThe COVID-19 pandemic necessitated PEOLC teaching to rapidly transition online and the use of novel approaches to facilitate clinical experience, however a number of medical schools intend to continue utilising skills and resources developed during this time.

Provision of palliative and end-of-life care in UK care homes during the COVID-19 pandemic: A mixed methods observational study with implications for policy.

Introduction: Little consideration has been given to how the provision of palliative and end-of-life care in care homes was affected by COVID-19. The aims of this study were to: (i) investigate the response of UK care homes in meeting the rapidly increasing need for palliative and end-of-life care during the COVID-19 pandemic and (ii) propose policy recommendations for strengthening the provision of palliative and end-of-life care within care homes. Materials and methods: A mixed methods observational study was conducted, which incorporated (i) an online cross-sectional survey of UK care homes and (ii) qualitative interviews with care home practitioners. Participants for the survey were recruited between April and September 2021. Survey participants indicating availability to participate in an interview were recruited using a purposive sampling approach between June and October 2021. Data were integrated through analytic triangulation in which we sought areas of convergence, divergence, and complementarity. Results: There were 107 responses to the survey and 27 interviews. We found that (i) relationship-centered care is crucial to high-quality palliative and end-of-life care within care homes, but this was disrupted during the pandemic. (ii) Care homes' ability to maintain high-quality relationship-centered care required key "pillars" being in place: integration with external healthcare systems, digital inclusion, and a supported workforce. Inequities within the care home sector meant that in some services these pillars were compromised, and relationship-centered care suffered. (iii) The provision of relationship-centered care was undermined by care home staff feeling that their efforts and expertise in delivering palliative and end-of-life care often went unrecognized/undervalued. Conclusion: Relationship-centered care is a key component of high-quality palliative and end-of-life care in care homes, but this was disrupted during the COVID-19 pandemic. We identify key policy priorities to equip care homes with the resources, capacity, and expertise needed to deliver palliative and end-of-life care: (i) integration within health and social care systems, (ii) digital inclusivity, (iii) workforce development, (iv) support for care home managers, and (v) addressing (dis)parities of esteem. These policy recommendations inform, extend, and align with policies and initiatives within the UK and internationally.

Role and response of primary healthcare services in community end-of-life care during COVID-19: Qualitative study and recommendations for primary palliative care delivery.

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.

End of life care in UK care homes - controlled drugs: systematic review and narrative synthesis.

BACKGROUND: Controlled drugs (CDs) such as opioids and midazolam are commonly used in end-of-life care symptom management for care home residents. AIM: To review the published evidence concerning the prescribing, storage, use and disposal of CDs for end-of-life care for care home residents in the UK. DESIGN: Systematic review and narrative synthesis. METHODS: Seven databases (Medline, CINAHL, Embase, PsycINFO, Web of Science, Cochrane Library, and Social Care Online) were searched from January 2000 to January 2021, alongside reference, citation and journal hand searches. Gough's 'Weight of Evidence' framework was used to appraise the relevance of studies to the review questions. RESULTS: The search yielded 1279 titles, from which 125 abstracts and then 42 full-text papers were screened. 14 papers were included in the synthesis. Prescribing is primarily by general practitioners, with administration by nurses. Nurses frequently report feeling inadequately trained in the use of CDs. The storage, monitoring and disposal of end-of-life care CDs in UK care homes has not been researched to date. The attitudes and experiences of residents and family members regarding these medications also remain unknown. CONCLUSION: The current widespread use of CDs for end-of-life care in care homes has a limited evidence base. The lack of research concerning the storing, monitoring and disposing of CDs, alongside the limited evidence concerning resident and family members' perspectives, is a significant knowledge deficit that requires urgent attention. PROSPERO REGISTRATION NUMBER: CRD42020173014.

How do doctors communicate and make decisions about assisted hydration near the last days of life? A qualitative interview study

BackgroundThe impact of assisted hydration at the end of life is unclear and prevalence varies considerably worldwide. Little is known about optimal strategies for communicating and decision-making about this ethically complex topic. Hydration at the end of life is known to be an important topic for family members, but conversations about assisted hydration occur infrequently despite guidance suggesting that such conversations should occur with all dying people and those close to them.AimTo explore doctors’ views and experiences of communicating and making decisions about assisted hydration at the end of life.DesignSemi-structured qualitative interview study with framework analysis.Setting/participantsSixteen UK-based Geriatrics and Palliative Medicine doctors were recruited from a range of hospitals, hospices and community services, before and during the Covid-19 pandemic.ResultsParticipants reported clinical, practical and ethical challenges associated with this topic. The hospital setting provides several barriers to high-quality communication about assisted hydration at the end of life, 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. Exclusion of patients from decision-making about assisted hydration appears to be common practice.ConclusionsProactive, routine discussion with dying people about issues relating to hydration 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.

Managing dying: multimedia end of life care simulation training for medical undergraduates

Background and IntroductionUK medical students consistently report feeling unprepared to look after patients in their last days of life.1 Junior doctors trained in the UK also frequently lack confidence in this key area of practice, in part due to a scarcity of undergraduate exposure to dying patients and associated decision-making.2 The COVID-19 pandemic has further reduced medical student opportunities to be involved in the care of dying patients and their families.MethodWe created a novel multimedia simulation, with participants playing the role of a F1 doctor managing a patient with advanced pancreatic cancer. We filmed actors in a replica ward environment to play the parts of the patient, their partner, a registered nurse, and a medical registrar. The final resource contained 48 video clips, 64 audio files, more than 200 pages of text, plus bespoke media items such as photographs, blood tests, and imaging results. The scenario was designed to unfold differently for each of the participants, depending on their individual decisions. This allowed them to make clinically significant mistakes in a safe way. In addition, real-time feedback was built in to optimise learning from patient assessment choices, medication rationalisation, anticipatory prescribing, and charged clinically assisted hydration discussions.Results164 final year medical students at the University of Cambridge completed Managing Dying in November 2020. Feedback was strongly positive, with several students reporting it was one of the most valuable learning experiences of their entire six-year course. Following completion, 92% of students reported feeling more confident about managing dying patients in the future.ConclusionMultimedia simulation can be an effective means of delivering undergraduate palliative care training. The format is particularly suited to providing students with experiences that are challenging to access otherwise, such as making patient-specific end of life care management decisions.ReferencesWells G, Youssef E, Winter R, et al. Medical student confidence in care of the dying and their family: a systematic review. BMJ Supportive & Palliative Care 2021;11:233–241.General Medical Council. Working in partnership to improve doctors’ preparedness for end of life care. Education and Training Advisory Board. 24 May 2016. Available at: https://www.gmc-uk.org/-/media/documents/4___Working_in_partnership_to_improve_doctors_27_preparedness_for_end_of_life_care.pdf_67192334.pdf

Community-based anticipatory prescribing during COVID-19: a qualitative study.

OBJECTIVES: To understand healthcare professionals' experiences of delivering anticipatory prescribing (AP) during the first wave of the UK COVID-19 pandemic. METHODS: Semistructured qualitative interviews were conducted with a purposive sample of 16 healthcare professionals involved in community palliative care. Data were analysed inductively using thematic analysis. RESULTS: Some of practitioners' fears about the pandemic's impact on delivering AP had not been realised during the first wave. Among patients with COVID-19 for whom community end-of-life care was deemed appropriate, deaths were perceived to be relatively easy to palliate with standard medications. These deaths were typically too rapid for AP to be appropriate or feasible. For non-COVID deaths, providing timely AP was more challenging: although community nurses and some palliative specialists continued to visit patients regularly, general practitioners did many fewer visits, moving abruptly to mainly remote consultations. This left some community nurses feeling undersupported, and prompted some palliative specialists to increase their direct involvement in AP. Several other changes were widely welcomed: collaboration to maintain drug supplies, adoption of online meetings and paperless practice, enhanced specialist helplines and a new policy allowing reuse of medication in care homes. The inclusion of more non-injectable options in AP protocols allowed clinicians to offer selected patients more choice, but few had yet done this in practice. No participants reported changing their prepandemic practice regarding administration of AP by lay caregivers. CONCLUSIONS: Accomplishing AP during a pandemic was challenging, requiring healthcare professionals to make rapid changes to their systems and practices. Some changes may produce lasting improvements.

Service change and innovation in community end-of-life care during the COVID-19 pandemic: Qualitative analysis of a nationwide primary care survey.

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.

Care home staff experiences of palliative and end-of-life care in care homes during COVID-19

BackgroundCOVID-19 has had a devastating impact on care homes, their residents and staff. Over 37,000 UK care home residents have died from COVID-19;many more have experienced symptoms and distress (Scobie, 2021). There has been very limited examination of palliative and end-of-life care in care homes during COVID-19, or strategies to improve this.AimsTo examine the experiences of care homes in England of providing palliative and end-of-life care during the COVID-19 pandemic and make recommendations for policy.MethodsOnline survey (in REDCap) of care home staff with leadership responsibilities, identified through established networks. The survey included structured data and free-text comments on COVID-19 outbreaks, experiences of symptom assessment and control, and impact on workforce. The primary outcome was staff self-efficacy to provide palliative and end-of-life care (Phillips, Salamonson, Davidson, 2011).ResultsInterim analysis of 66 respondents found that most staff felt confident to provide palliative care, as measured by the self-efficacy scale (median 3.75, range 1-4 ). 51% (33/65) of respondents identified issues with staff shortages during the pandemic;38% (24/64) experienced changes in staff responsibilities;18% (12/65) experienced challenges in recognising that residents may be dying. 18% (12/65) of care homes did not allow visitors at the end-of-life, and 39% (25/64) experienced difficulties in accessing help from other services. 51% (33/65) experienced challenges in providing bereavement support to relatives. Free-text comments identified staff shortages and exhaustion, and lack of support from other healthcare services, as barriers to good care.ConclusionThis is the first national survey to explore provision of palliative and end-of-life care in care homes during the COVID-19 pandemic. The results will be used to inform policy to ensure high-quality provision of palliative and end-of-life care during future pandemics.

Changes in mortality patterns and place of death during the COVID-19 pandemic: A descriptive analysis of mortality data across four nations.

BACKGROUND: Understanding patterns of mortality and place of death during the COVID-19 pandemic is important to help provide appropriate services and resources. AIMS: To analyse patterns of mortality including place of death in the United Kingdom (UK) (England, Wales, Scotland and Northern Ireland) during the COVID-19 pandemic to date. DESIGN: Descriptive analysis of UK mortality data between March 2020 and March 2021. Weekly number of deaths was described by place of death, using the following definitions: (1) expected deaths: average expected deaths estimated using historical data (2015-19); (2) COVID-19 deaths: where COVID-19 is mentioned on the death certificate; (3) additional non-COVID-19 deaths: above expected but not attributed to COVID-19; (4) baseline deaths: up to and including expected deaths but excluding COVID-19 deaths. RESULTS: During the analysis period, 798,643 deaths were registered in the UK, of which 147,282 were COVID-19 deaths and 17,672 were additional non-COVID-19 deaths. While numbers of people who died in care homes and hospitals increased above expected only during the pandemic waves, the numbers of people who died at home remained above expected both during and between the pandemic waves, with an overall increase of 41%. CONCLUSIONS: Where people died changed during the COVID-19 pandemic, with an increase in deaths at home during and between pandemic waves. This has implications for planning and organisation of palliative care and community services. The extent to which these changes will persist longer term remains unclear. Further research could investigate whether this is reflected in other countries with high COVID-19 mortality.

The Value of Quantitative Faecal Immunochemical Testing as a Prioritisation Tool for the Endoscopic Investigation of Patients With Iron Deficiency.

Difficulty in providing endoscopy for patients with iron deficiency anaemia (IDA) during the COVID-19 pandemic has highlighted the requirement for a prioritisation tool. We aimed to test the validity of qFIT as a prioritisation tool in patients with iron deficiency and its ability to identify patients with advanced neoplastic lesions (ANLs). Data collected from patients referred with biochemically proven iron deficiency (ferritin ≤ 15 µg/L) and synchronous qFIT who underwent full gastrointestinal investigation within NHS Greater Glasgow and Clyde was analysed retrospectively. Patients who did not undergo full investigation, defined as gastroscopy and colonoscopy or CT colonography, were excluded. ANLs were defined as defined as upper GI cancer, colorectal adenoma ≥ 1 cm or colorectal cancer. Area under the curve (AUC) analysis was performed on qFIT results and outcome, defined as the presence of an ANL. AUC analysis guided cut-off scores for qFIT. Patients with a qFIT of <10, 10-200, >200, were allocated a score of 1, 2, and 3, respectively. A total of 575 patients met criteria for inclusion into the study. Overall, qFIT results strongly predicted the presence of ANLs (AUC 0.87, CI 0.81-0.92; P < 0.001). The prevalence of ANLs in patients with scores 1-3 was 1.2, 13.5, and 38.9% respectfully. When controlled for other significant variables, patients with a higher qFIT score were statistically more likely to have an ANL (qFIT score = 2; OR 12.8; P < 0.001, qFIT score = 3, OR 50.0; P < 0.001). A negative qFIT had a high NPV for the presence of ANLs (98.8%, CI 97.0-99.5%). These results strongly suggest that qFIT has validity as a prioritisation tool in patients with iron deficiency; both allowing for a more informed decision of investigation of patients with very low risk of malignancy, and in identifying higher risk patients who may benefit from more urgent endoscopy.

Community end-of-life care during the COVID-19 pandemic: findings of a UK primary care survey.

BACKGROUND: Thousands of people in the UK have required end-of-life care in the community during the COVID-19 pandemic. Primary healthcare teams (general practice and community nursing services) have provided the majority of this care, alongside specialist colleagues. There is a need to learn from this experience in order to inform future service delivery and planning. AIM: To understand the views of GPs and community nurses providing end-of-life care during the first wave of the COVID-19 pandemic. DESIGN & SETTING: A web-based, UK-wide questionnaire survey circulated via professional general practice and community nursing networks, during September and October 2020. METHOD: Responses were analysed using descriptive statistics and an inductive thematic analysis. RESULTS: Valid responses were received from 559 individuals (387 community nurses, 156 GPs, and 16 unspecified roles), from all regions of the UK. The majority reported increased involvement in providing community end-of-life care. Contrasting and potentially conflicting roles emerged between GPs and community nurses. There was increased use of remote consultations, particularly by GPs. Community nurses took greater responsibility in most aspects of end-of-life care practice, particularly face-to-face care, but reported feeling isolated. For some GPs and community nurses, there has been considerable emotional distress. CONCLUSION: Primary healthcare services are playing a critical role in meeting increased need for end-of-life care in the community during the COVID-19 pandemic. They have adapted rapidly, but the significant emotional impact, especially for community nurses, needs addressing alongside rebuilding trusting and supportive team dynamics.

Cutting through complexity: the Breathing, Thinking, Functioning clinical model is an educational tool that facilitates chronic breathlessness management.

Chronic breathlessness is a distressing symptom that is challenging to manage. The Breathing, Thinking, Functioning clinical model is an educational tool developed to support breathlessness management. Health professionals report that the model increases clinician and patient understanding of this complex symptom, and provides a simple and structured approach to personalised self-management.

5 Primary care delivers palliative care during COVID-19: a national UK survey of GP’s and community nurses

BackgroundRapid, dramatic changes in primary healthcare services occurred during the COVID-19 pandemic. More palliative and end-of-life care (PEOLC) in the community and care homes needed delivered in new ways. This study sought General Practitioner (GP) and community nursing views about changes related to PEOLC during the COVID-19 pandemic.MethodsA national online survey was developed from current literature, patient, public and key stakeholder involvement and disseminated to GPs and community nurses between 01.09.2020 and 16.10.2020. Fixed response and open free text questions addressed demographics, PEOLC provision, changes, challenges and exemplars of good practice.ResultsThere were 559 responses (387 (71.3%) community nurses;156 (28.7%) GPs;6 ‘role not specified’) from all UK countries. Over half (296, 53.1%) cared for patients dying with ‘confirmed’ COVID-19 and provided PEOLC ‘a lot more’ or ‘a bit more than usual’ to non-COVID patients (322, 58.2%).All respondents reported increased need to provide family support (339, 60.9% providing ‘a lot’/’a bit more than usual’);a larger proportion of community nurses (252, 66.0%) reported this role change compared with doctors (75, 48.1%, p=0.01). Over forty percent of all respondents reported they were undertaking more advance care planning (266, 53.0%), anticipatory prescribing (227, 56.4%), symptom management (275, 51.1%), death verification (222, 47.8%) and bereavement support (237, 44.6%). Over three-quarters (211, 77.0%) of community nurses had conducted ‘more’/‘a lot more’ face-to-face visits, whereas 53 (34.0%) of GPs had done ‘less’ or ‘a lot less’ (<0.0001).Qualitative free-text themes relate to increasing end-of-life care workload;changing roles and models of consultation;and emotional impact.ConclusionsContrasting and potentially conflicting roles emerged between GPs and community nurses concerning their response to the increased demand and complexity of PEOLC during the pandemic. The significant emotional impact, especially for community nurses, needs addressing alongside rebuilding trusting and supportive team dynamics.