Hospice inpatient care models: cross-sectional inequality survey.

OBJECTIVES: Hospices provide a range of services including inpatient units (IPUs) and care in people's homes. 40 000-50 000 patients use IPUs in the UK per year. Little published data exist on IPU models. This paper explores the structure and funding of IPU across the Southwest (SW) of England (population 5.6 million), alongside impact of COVID-19. METHODS: An electronic survey of all 13 IPUs. Data collated, tabulated and compared with national commissioning guidance. RESULTS: A 92% survey response rate revealed large variation in bed availability per 250 000 of SW population: 2.5-18.2. Referrals and admissions per IPU bed per year ranged from 16 to 38.2 (or 39-127 per 100 000 population) and 21.7 (mean), respectively. There was significant workforce variability: 1.3-12.7 nurses per 7.5 hospice beds, 1.2-7.2 consultants per 20 hospice beds, varying multidisciplinary team members with many unfilled posts. National Health Service (NHS) funding ranged from 10% to 75% of total costs. During COVID-19, 4 of 12 hospices reduced bed capacity, while half described increased integration with other teams outside of the hospice. CONCLUSION: There is significant regional variability suggesting inequality in hospice bed availability per 250 000 population. There is also considerable variability in workforce, alongside the proportion of NHS funding. Such variability implies little is known about the optimal IPU model. This provides new meaningful information about the structure and funding of hospices, with further research needed to consider these differences on the impact on patient and family experiences and outcomes. The sustainability and opportunities of integration and collaboration across care settings are also paramount.

Enhanced supportive care in cancer centres: national cross-sectional survey.

OBJECTIVES: 'Early' specialist palliative care (SPC) has been shown to improve outcomes for patients with advanced cancer, yet patients are often referred late. 'Enhanced supportive care' (ESC) aims to facilitate earlier integrated supportive care for those with incurable cancer. This study aimed to explore clinicians' understanding of ESC/SPC delivery through description of current service provision. METHODS: This national cross-sectional survey of 53 cancer centres had two parts. Part 1: Service details, was directed to lead ESC/SPC nurses or consultants about service configuration, and Part 2: Clinician understanding, targeting conceptual understanding of service aims including ESC/SPC teams and oncology consultants (n=262 surveys). Multiple-choice questions explored service provision, referral triggers and evidence of integration with oncology, with free-text responses. Quantitative results were analysed with Fischer's exact test. Qualitative free text was line-by-line coded by two authors independently to derive themes. RESULTS: 56% (30/53) of SPC and ESC teams and 14% (14/100) of oncologists responded. Those involved in ESC self-reported greater integration with oncology compared with non-ESC teams, for example, joint case discussions (64.3%, 9/14 vs 23.1%, 3/13, p=0.05), and timelier patient referral ((>6 months before death vs <6 months) (10/14 vs 4/13, p=0.06)). Qualitative themes described ambiguity in definitions of supportive and palliative terms and a perception of timelier identification of patients when ESC was involved. CONCLUSION: Providers of ESC perceive greater integration with oncology and potentially timelier referral for patients compared with teams not delivering ESC. Terminology around SPC and ESC remains uncertain across England.

Qualified and motivated, but limited by specialty-specific barriers: a national survey of UK Palliative Medicine consultants research experience.

OBJECTIVES: Providing high-quality safe palliative care requires high-quality clinically driven research. Little is known about how to optimise clinical research capacity in this field.To understand interest and capacity to conduct clinical research in palliative medicine and identify key facilitators and barriers, by surveying palliative medicine consultants and academic trainees. METHODS: National online survey exploring experience in conducting research, including facilitators and barriers. Sent to all current UK palliative medicine consultants, and previous/current academic trainees. Descriptive statistics are reported with framework analysis of free text responses. RESULTS: 195 surveys were submitted including 15 respondents with Integrated Academic Training (IAT) experience. 78% (n=140/180) of consultants were interested in conducting research. Despite this enthusiasm, 83% had no allocated time within their job plan. 88% of those who undertook IAT would recommend IAT, but 60% reported difficulty transitioning from academic trainee to research active consultant.Barriers to research included; insufficient research culture and integration, with small teams working in a mixture of National Health Service (NHS) and non-NHS settings, leading to isolated, silo working. Even those who had undertaken IAT, felt a 'cliff edge' in opportunities after completing IAT. Filling service gaps was routinely prioritised over research activity. CONCLUSION: Palliative medicine consultants, including those who have completed academic training want to conduct research but overwhelming barriers limit activity. A palliative care-specific strategy that permeates different palliative care settings, promotes interspecialty collaboration and improves the current infrastructure for palliative care research to maximise gains from IAT and embed a research culture are suggested.

Novel methods to define invasive procedures at the end of life were developed to improve quality of end of life care research: a population-based cohort study in colorectal cancer.

BACKGROUND: Understanding the use of invasive procedures (IPs) at the end of life (EoL) is important to avoid undertreatment and overtreatment, but epidemiologic analysis is hampered by limited methods to define treatment intent and EoL phase. This study applied novel methods to report IPs at the EoL using a colorectal cancer case study. METHODS: An English population-based cohort of adult patients diagnosed between 2013 and 2015 was used with follow-up to 2018. Procedure intent (curative, noncurative, diagnostic) by cancer site and stage at diagnosis was classified by two surgeons independently. Joinpoint regression modeled weekly rates of IPs for 36 subcohorts of patients with incremental survival of 0-36 months. EoL phase was defined by a significant IP rate change before death. Zero-inflated Poisson regression explored associations between IP rates and clinical/sociodemographic variables. RESULTS: Of 87,731 patients included, 41,972 (48%) died. Nine thousand four hundred ninety two procedures were classified by intent (inter-rater agreement 99.8%). Patients received 502,895 IPs (1.39 and 3.36 per person year for survivors and decedents). Joinpoint regression identified significant increases in IPs 4 weeks before death in those living 3-6 months and 8 weeks before death in those living 7-36 months from diagnosis. Seven thousand nine hundred eight (18.8%) patients underwent IPs at the EoL, with stoma formation the most common major procedure. Younger age, early-stage disease, men, lower comorbidity, those receiving chemotherapy, and living longer from diagnosis were associated with IPs. CONCLUSION: Methods to identify and classify IPs at the EoL were developed and tested within a colorectal cancer population. This approach can be now extended and validated to identify potential undertreatment and overtreatment.

Engaging and supporting the public on the topic of grief and bereavement: an evaluation of Good Grief Festival.

Background: Good Grief Festival was originally planned as a face-to-face festival about grief and bereavement. Due to COVID-19, it was held online over 3 days in October 2020. Objective: To evaluate the festival's reach and impact. Design: Pre/post evaluation. Methods: Pre-festival online surveys assessed reasons for attending and attitudes to bereavement across four items (fear of saying the wrong thing, avoiding talking to someone bereaved, knowing what to do if someone bereaved was struggling, knowing how to help). Post-festival online surveys evaluated audience experiences and the four attitude items. Free-text responses, analysed using thematic analysis, generated suggestions for improvement and general comments. Results: Between 5003 and 6438 people attended, with most attending two to five events. Pre-festival survey participants (n = 3785) were mostly women (91%) and White (91%). About 9% were from Black or minoritised ethnic communities. About 14% were age ⩾65 years, 16% age ⩽34 years. Around 75% were members of the public, teachers, students or 'other'; 25% academics, clinicians or bereavement counsellors. A third had been bereaved in the last year; 6% had never been bereaved. People attended to learn about grief/bereavement (77%), be inspired (52%) and feel part of a community (49%). Post-festival participants (n = 685) reported feeling part of a community (68%), learning about grief/bereavement (68%) and being inspired (66%). 89% rated the festival as excellent/very good and 75% agreed that they felt more confident talking about grief after attending. Higher ratings and confidence were associated with attending more events. Post-festival attitudes were improved across all four items (p < 0.001). Attendees appreciated the festival, particularly valuing the online format, opportunities for connection during lockdown and the diversity and quality of speakers. Suggestions included improving registration, more interactive events and less content. Conclusion: Good Grief Festival successfully reached a large public audience, with benefit in engagement, confidence and community-building. Evaluation was critical in shaping future events. Findings suggest festivals of this nature can play a central role in increasing death- and grief-literacy within a public health approach.

What was the impact of Good Grief Festival? Why was this study done? We designed Good Grief Festival to improve knowledge about bereavement and support for bereaved people. Due to the pandemic, the festival was held online over 3 days in October 2020. In this study, we assessed the festival's impact on the people who attended. What did the researchers do? Before the event, we sent an online survey to everyone who registered. It asked their attitudes to bereavement, such as whether they were 'scared of saying the wrong thing' to bereaved people or knew how to help/support them. After the festival, we sent everyone who attended a survey containing the same pre-event questions, alongside extra questions about their experience of the festival and suggestions for improvement. What did the researchers find? Between 5005 and 6438 people attended the festival. A total of 3785 people completed the pre-festival survey. They wanted to learn about grief/bereavement (77%), be inspired (52%) and feel part of a community (49%). The post-festival survey was completed by 685 people who said they learnt about grief/bereavement (68%), were inspired (66%) and felt part of a community (68%). Most people (89%) rated the festival as excellent/very good and said that through attending the festival they felt more confident in talking to a bereaved person and knowing how to support them. People who attended more events were more confident. Suggestions to improve the festival included improving registration, more interactive and arts-based events and offering a smaller programme overall. Most people who completed the survey were women (91%) and White (91%). What do the findings mean? Overall, Good Grief Festival successfully reached a large public audience. It helped to improve people's confidence when supporting bereaved people and made them feel part of a community. The survey feedback helped us improve and shape future events.

Training surgeons to optimize communication and symptom management in patients with life-limiting conditions: systematic review.

BACKGROUND: Surgeons routinely care for patients with life-limiting illness, requiring communication and symptom management skills supported by appropriate training. The objective of this study was to appraise and synthesize studies that assessed surgeon-directed training interventions that aimed to optimize communication and symptom management for patients with life-limiting illness. METHODS: A PRISMA-concordant systematic review was undertaken. MEDLINE, Embase, Allied and Complementary Medicine Database (AMED), and the Cochrane Central Register of Controlled Trials were searched from inception until October 2022 for studies reporting on the evaluation of surgeon-training interventions intending to improve surgeons' communication or symptom management of patients with life-limiting disease. Data on the design, trainer and patient participants, and the intervention were extracted. Risk of bias was assessed. RESULTS: Of 7794 articles, 46 were included. Most studies employed a before-after approach (29 studies) and nine included control groups with five being randomized studies. General surgery was the most frequently included sub-specialty (22 studies). Trainers were described in 25 of 46 studies. Most training interventions aimed to improve communication skills (45 studies) and 13 different training interventions were described. Eight studies reported a measurable improvement in patient care, such as increased documentation of advance care discussions. Most study outcomes focused on surgeons' knowledge (12 studies), skills (21 studies), and confidence/comfort (18 studies) in palliative communication skills. Studies had a high risk of bias. CONCLUSION: Whilst interventions exist to improve the training of surgeons managing patients with life-threatening conditions, evidence is limited, and studies measure the direct impact on patient care insufficiently. Improved research is needed to lead to better methods for training surgeons to benefit patients.

Amputation and advance care plans: An observational study exploring decision making and long-term outcomes in a vascular centre.

BACKGROUND: Half of those undergoing major lower limb amputation for peripheral arterial disease die within 1 year. Advance care planning reduces days in hospital and increases the chance of dying in a preferred place. AIM: To investigate the prevalence and content of advance care planning for people having a lower limb amputation due to acute or chronic limb-threatening ischaemia or diabetes. Secondary aims were to explore its association with mortality, and length of hospital stay. DESIGN: A retrospective observational cohort study. The intervention was advance care planning. SETTING/PARTICIPANTS: Patients admitted to the South West England Major Arterial Centre between 1 January 2019 and 1 January 2021 who received unilateral or bilateral below, above, or through knee amputation due to acute or chronic limb-threatening ischaemia or diabetes. RESULTS: 116 patients were included in the study. 20.7% (n = 24) died within 1 year. 40.5% (n = 47) had an advance care planning discussion of which all included cardiopulmonary resuscitation decisions with few exploring other options. Patients who were more likely to have advance care planning discussions were ≥75 years (aOR = 5.58, 95%CI 1.56-20.0), female (aOR = 3.24, 95%CI 1.21-8.69), and had multimorbidity (Charlson Comorbidity Index ≥5, aOR = 2.97, 95%CI 1.11-7.92). Discussions occurred more often in the emergency pathway and were predominantly initiated by physicians. Advance care planning was associated with increased mortality (aHR = 2.63, 95%CI 1.01, 5.02) and longer hospital stay (aHR = 0.52, 95%CI 0.32-0.83). CONCLUSIONS: Despite a high risk of death for all patients in the months following amputation, advance care planning occurred in fewer than half of people and mostly focused on resuscitation.

Right needle, right patient, right time? A national flash-mob audit of thromboprophylaxis in palliative care.

BACKGROUND: The prevention of hospital associated thrombosis in palliative care remains controversial yet many countries recommend the documented risk assessment and where appropriate pharmacological prophylaxis of inpatients with advanced cancer. AIM: To audit adherence to national guidelines which require hospitalised patients to be risk assessed and receive appropriate thromboprophylaxis. DESIGN: A one day "flash-mob" audit across multiple clinical inpatient sites across the United Kingdom. SETTING/PARTICIPANTS: Inpatients receiving palliative care within hospitals, hospices and specialist palliative care units across the United Kingdom. RESULTS: Data were collected from 1125 patients (514 hospital and 611 hospice/specialist palliative care units). Appropriate thromboprophylaxis was observed in 90 % of hospital and 90 % hospice/specialist palliative care units. Documented risk assessment was only found in 79 % and 71 % of patient notes respectively. Pharmacological thromboprophylaxis was contraindicated in 88 % of hospice/specialist palliative care unit patients due to bleeding risk or receiving end-of-life care. Twenty-four percent of patients in hospital had contraindications due to receiving end of life care, bleeding risk and thrombocytopenia. Patients in hospice/specialist palliative care units were of poorer performance status prior to admission with a history of gradual deterioration. Hospitalised patients were more likely to have been admitted following an acute deterioration of previous good performance status. CONCLUSION: Thromboprophylaxis guidelines were followed correctly for the majority of patients. There were considerable differences in the demographics of patients according to place of admission. Patients admitted to hospice/specialist palliative care units were sicker and had more contraindications to prophylaxis than those admitted to hospital. Thromboprophylaxis focused research data conducted in hospices is unlikely to be applicable to the care of palliative care patients admitted acutely to hospital.

How are public engagement health festivals evaluated? A systematic review with narrative synthesis.

The evaluation of public engagement health festivals is of growing importance, but there has been no synthesis of its practice to date. We conducted a systematic review of evidence from the evaluation of health-related public engagement festivals published since 2000 to inform future evaluation. Primary study quality was assessed using the Mixed Methods Appraisal Tool. Extracted data were integrated using narrative synthesis, with evaluation methods compared with the Queen Mary University of London public engagement evaluation toolkit. 407 database records were screened; eight studies of varied methodological quality met the inclusion criteria. Evaluations frequently used questionnaires to collect mixed-methods data. Higher quality studies had specific evaluation aims, used a wider variety of evaluation methods and had independent evaluation teams. Evaluation sample profiles were often gender-biased and not ethnically representative. Patient involvement in event delivery supported learning and engagement. These findings and recommendations can help improve future evaluations. (Research Registry ID reviewregistry1021).

Which patients received a ReSPECT form, what was documented and what were the patient outcomes? A protocol for a retrospective observational study investigating the impact of the COVID-19 pandemic on the implementation of the ReSPECT process.

INTRODUCTION: Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) is a UK advance care planning (ACP) initiative aiming to standardise the process of creating personalised recommendations for a person's clinical care in a future emergency and therefore improve person-focused care. Implementation of the ReSPECT process across a large geographical area, involving both community and secondary care, has not previously been studied. In particular, it not known whether such implementation is associated with any change in outcomes for those patients with a ReSPECT form.Implementation of ReSPECT in the Bristol, North Somerset and South Gloucestershire (BNSSG) Clinical Commissioning Group (CCG) area overlapped with the first UK COVID-19 wave. It is unclear what impact the pandemic had on the implementation of ReSPECT and if this affected the type of patients who underwent the ReSPECT process, such as those with specific diagnoses or living in care homes. Patterns of clinical recommendations documented on ReSPECT forms during the first year of its implementation may also have changed, particularly with reference to the pandemic.To determine the equity and potential benefits of implementation of the ReSPECT form process in BNSSG and contribute to the ACP evidence base, this study will describe the characteristics of patients in the BNSSG area who had a completed ReSPECT form recorded in their primary care medical records before, during and after the first wave of the COVID-19 pandemic; describe the content of ReSPECT forms; and analyse outcomes for those patients who died with a ReSPECT form. METHODS AND ANALYSIS: We will perform an observational retrospective study on data, collected from October 2019 for 12 months. Data will be exported from the CCG Public Health Management data resource, a pseudonymised database linking data from organisations providing health and social care to people across BNSSG. Descriptive statistics of sociodemographic and health-related variables for those who completed the ReSPECT process with a clinician and had a documented ReSPECT form in their notes, in addition to their ReSPECT form responses, will be compared between before, during and after first COVID-19 wave groups. Additionally, routinely collected outcomes for patients who died in our study period will be compared between those who completed the ReSPECT process with a community clinician, hospital clinician or not at all. These include emergency department attendances, emergency hospital admissions, community nurse home visits, hospice referrals, anticipatory medication prescribing, place of death and if the patient died in preferred place of death. ETHICS AND DISSEMINATION: Approval has been obtained from a National Health Service Research Ethics Committee (20/YH/0185). Findings will be disseminated to policy decision-makers, care providers and the public through scientific meetings and peer-reviewed publication.

Acute hospital specialist palliative care: multidisciplinary team models and workforce in South West England.

OBJECTIVES: Acute hospital specialist palliative care teams (SPCTs) improve patient care and reduce length of stay. UK guidance recommends SPCTs provide face-to-face assessments 7 days a week and offer 24-hour telephone advice. Little published data exist on SPCT staffing models.This paper aims to explore team structure, funding and impact of COVID-19 on SPCTs across the South West (SW) of England (population of nearly six million). METHODS: Electronic survey to SPCT clinical leads in 15 SW acute hospitals. RESULTS: All 15 acute hospitals have an SPCT. There was variability in SPC clinical nurse specialist and consultant availability, 0.27-2.7 whole-time equivalent (WTE) and 0.1-1.5 WTE, respectively, per 250 beds. 13/15 (87%) provide out-of-hours (OOH) palliative care advice with 60% reliant on charity services. Few SW teams meet national guidance for SPC staffing to bed ratios. 8/15 teams reported greater integration with other services during the COVID-19 pandemic. CONCLUSION: There is significant variability in SPCT structure and staffing. The charity sector (independent hospices) often provides OOH acute hospital SPC advice. Further research is needed to consider the impact of different SPCT models on patient and family outcomes, and the sustainability and opportunities offered by integration of services and collaboration across care settings during COVID-19.

UK Palliative trainees Research Collaborative (UK-PRC): the first 5 years - 0-100 study sites.

OBJECTIVES: Palliative care research suffers from underfunding and a workforce spread across multiple settings leading to a lack of large-scale studies. To facilitate multisite research and audit we set up the UK Palliative trainees Research Collaborative (UKPRC), the first national trainee-led audit and research collaborative in palliative care. Here, we critically review the progress and potential of the UKPRC since its inception in 2016, identifying key challenges and facilitators. Members of the UKPRC steering committee collaborated to write this reflection, reviewing existing evidence regarding trainee-led research collaboratives. FINDINGS: The UKPRC has representation from 16/19 UK training regions. Projects are run by a core team; local collaborators collect data at each site. The collaborative is supported by academic leads and newly qualified consultants to develop a culture of continuous improvement in practice. We have conducted four national projects to date, including an audit covering 119 sites. Facilitators for our work include a focus on inclusivity and national representation; support from recently qualified consultants to ensure continuity; and taking a pragmatic approach, focusing initially on straightforward projects to build momentum. Challenges include the step from national audit to multisite, patient-facing research and maintaining continuity in a membership with high turnover. CONCLUSIONS: There is potential to change practice through large scale data collection via the trainee-led collaborative model. Collaboration is especially important in a small specialty with limited resources. The UKPRC has demonstrated 'proof of concept' and has the potential to support and sustain a culture where research can flourish within palliative care.

Modelling palliative and end-of-life resource requirements during COVID-19: implications for quality care.

OBJECTIVES: The WHO estimates that the COVID-19 pandemic has led to more than 1.3 million deaths (1 377 395) globally (as of November 2020). This surge in death necessitates identification of resource needs and relies on modelling resource and understanding anticipated surges in demand. Our aim was to develop a generic computer model that could estimate resources required for end-of-life (EoL) care delivery during the pandemic. SETTING: A discrete event simulation model was developed and used to estimate resourcing needs for a geographical area in the South West of England. While our analysis focused on the UK setting, the model is flexible to changes in demand and setting. PARTICIPANTS: We used the model to estimate resourcing needs for a population of around 1 million people. PRIMARY AND SECONDARY OUTCOME MEASURES: The model predicts the per-day 'staff' and 'stuff' resourcing required to meet a given level of incoming EoL care activity. RESULTS: A mean of 11.97 hours of additional community nurse time, up to 33 hours of care assistant time and up to 30 hours additional care from care assistant night sits will be required per day as a result of out of hospital COVID-19 deaths based on the model prediction. Specialist palliative care demand is predicted to increase up to 19 hours per day. An additional 286 anticipatory medicine bundles per month will be necessary to alleviate physical symptoms at the EoL care for patients with COVID-19: an average additional 10.21 bundles of anticipatory medication per day. An average additional 9.35 syringe pumps could be needed to be in use per day. CONCLUSIONS: The analysis for a large region in the South West of England shows the significant additional physical and human resource required to relieve suffering at the EoL as part of a pandemic response.

Sadness, despair and anger when a patient dies alone from COVID-19: A thematic content analysis of Twitter data from bereaved family members and friends.

BACKGROUND: To inform clinical practice and policy, it is essential to understand the lived experience of health and social care policies, including restricted visitation policies towards the end of life. AIM: To explore the views and experiences of Twitter social media users who reported that a relative, friend or acquaintance died of COVID-19 without a family member/friend present. DESIGN: Qualitative content analysis of English-language tweets. DATA SOURCES: Twitter data collected 7-20th April 2020. A bespoke software system harvested selected publicly-available tweets from the Twitter application programming interface. After filtering we hand-screened tweets to include only those referring to a relative, friend or acquaintance who died alone of COVID-19. Data were analysed using thematic content analysis. RESULTS: 9328 tweets were hand-screened; 196 were included. Twitter users expressed sadness, despair, hopelessness and anger about their experience and loss. Saying goodbye via video-conferencing technology was viewed ambivalently. Clinicians' presence during a death was little consolation. Anger, frustration and blame were directed at governments' inaction/policies or the public. The sadness of not being able to say goodbye as wished was compounded by lack of social support and disrupted after-death rituals. Users expressed a sense of political neglect/mistreatment alongside calls for action. They also used the platform to reinforce public health messages, express condolences and pay tribute. CONCLUSION: Twitter was used for collective mourning and support and to promote public health messaging. End-of-life care providers should facilitate and optimise contact with loved ones, even when strict visitation policies are necessary, and provide proactive bereavement support.

Palliative Medicine Specialist Trainee Research experience, interest and opportunities: a national survey.

OBJECTIVES: Despite the acknowledged benefits of research, Palliative Medicine receives minimal research funding and has few dedicated research training posts. This study investigated the opportunities and barriers to participating in research for the current cohort of UK Palliative Medicine Specialist Trainees (PMSTs), to better understand the opportunities to improve evidence-based practice within the specialty. METHODS: Two surveys, one for PMSTs and a second for training programme directors (TPDs), were developed. Surveys were piloted and then reviewed by the UK Palliative trainee Research Collaborative and the Palliative Medicine Specialty Advisory Committee (SAC) before distribution. All current PMSTs and TPDs representing all of the UK training regions (n=13) were invited to complete the appropriate survey. RESULTS: Overall, 85% (11/13) and 45% (102/225) of TPDs and PMSTs responded, respectively. Almost all (92%) PMSTs reported that they were either 'very interested' or 'quite interested' in taking part in clinical research. PMSTs generally felt that educationaland clinical supervisors were supportive of them taking part in research; however, few (35%) believed they had access to personnel with adequate research experience to provide practical support. Opportunity for appropriate research supervision varied considerably by training region. Where research was being conducted, it was often conducted in trainees' personal time due to the wide regional variation in dedicated research time. CONCLUSION: Despite significant interest in clinical research and support by TPDs and clinical supervisors, access to experienced researchers and equitable protected research time by region needs urgent attention to enhance progress in evidence-based palliative medicine.

COVID-19, palliative care and public health.

The lack of integration between public health approaches, cancer care and palliative and end-of-life care in the majority of health systems globally became strikingly evident in the context of the coronavirus disease 2019 (COVID-19) pandemic. At the same time, the collapse of the boundaries between these domains imposed by the pandemic created unique opportunities for intersectoral planning and collaboration. While the challenge of integration is not unique to oncology, the organisation of cancer care and its linkages to palliative care and to global health may allow it to be a demonstration model for how the problem of integration can be addressed. Before the pandemic, the large majority of individuals with cancer in need of palliative care in low- and middle-income countries and the poor or marginalised in high-income countries were denied access. This inequity was highlighted by the COVID-19 pandemic, as individuals in impoverished or population-dense settings with weak health systems have been more likely to become infected and to have less access to medical care and to palliative and end-of-life care. Such inequities deserve attention by government, financial institutions and decision makers in health care. However, there has been no framework in most countries for integrated decision-making that takes into account the requirements of public health, clinical medicine and palliative and end-of-life care. Integrated planning across these domains at all levels would allow for more coordinated resource allocation and better preparedness for the inevitability of future systemic threats to population health.

Bereavement Support on the Frontline of COVID-19: Recommendations for Hospital Clinicians.

Deaths due to COVID-19 are associated with risk factors which can lead to prolonged grief disorder, post-traumatic stress, and other poor bereavement outcomes among relatives, as well as moral injury and distress in frontline staff. Here we review relevant research evidence and provide evidence-based recommendations and resources for hospital clinicians to mitigate poor bereavement outcomes and support staff. For relatives, bereavement risk factors include dying in an intensive care unit, severe breathlessness, patient isolation or restricted access, significant patient and family emotional distress, and disruption to relatives' social support networks. Recommendations include advance care planning; proactive, sensitive, and regular communication with family members alongside accurate information provision; enabling family members to say goodbye in person where possible; supporting virtual communication; providing excellent symptom management and emotional and spiritual support; and providing and/or sign-posting to bereavement services. To mitigate effects of this emotionally challenging work on staff, we recommend an organizational and systemic approach which includes access to informal and professional support.

"What's fair to an individual is not always fair to a population": A qualitative study of patients and their health professionals using the Cancer Drugs Fund.

OBJECTIVE: To understand the values attached to cancer treatment at the end of life (EoL) to inform policy decisions around the Cancer Drugs Fund (CDF) and the National Institute for Health and Care Excellence (NICE) EoL criterion. DESIGN: Semi-structured interviews with patients and health professionals. Purposive recruitment was performed iteratively alongside analysis of interview transcripts using constant comparison. PARTICIPANTS: Patients with incurable prostate and colorectal cancer (n = 22) who received drugs funded through the CDF and oncologists and palliative care professionals (n = 16) treating patients on CDF drugs. RESULTS: While the majority of patient and oncologist participants expressed gratitude for access to the CDF, some patient participants reported experiencing a sense of guilt, and many oncologists admitted to concern about the justice of a ring-fenced fund solely for anti-cancer drugs. For patient and professional participants, cancer drugs were not necessarily seen as a funding priority over other calls on the NHS purse. Overall, patients and health professionals emphasised prioritising quality over quantity at the end of life, with only a minority describing improved quality of life at the end of life which added value. CONCLUSION: While patients and oncologists appreciated the drugs available through the CDF, most expressed concern about its fairness. Competing participant views about the added value of the end of life is challenging for resource allocation.