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.

Evaluation of good grief festival, a public engagement initiative on grief and bereavement

BackgroundGood Grief Festival was planned as a face-to-face festival to engage the public in multi-disciplinary research about grief and bereavement. Due to COVID-19, the festival was held online over 3 days in October 2020.AimTo evaluate the festival’s reach and impact.MethodsA pre/post evaluation was conducted via online surveys. Pre-festival surveys assessed reasons for attending and attitudes to bereavement across 4 items (being scared of saying the wrong thing, avoiding talking to someone bereaved, knowing what to do if someone bereaved was having trouble, knowing what kind of help/support to offer). Post-festival surveys evaluated audience experiences and the 4 attitude items.Results8500+ people attended, with most attending 2–5 events. Pre-festival survey participants (n=3785) were majority women (91%) and White (91%). 9% were from Black or minoritized ethnic communities. 14% were age ≥65 years, 16% age ≤34 years. 44% were members of the public. 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, with a higher rating associated with attending a greater number of events. 75% agreed that through attending they felt more confident talking about grief. Post-festival attitudes were significantly higher across all 4 items (P<0.001). Free-text data showed appreciation e.g. for the online format, connection in the context of lockdown and ethnic diversity in speakers. Suggestions included improving registration, more interactive/arts-based events and reducing the volume of content.ConclusionGood Grief Festival was successful at reaching a large public audience, with data indicating benefit in terms of engagement and confidence. The evaluation was critical in shaping future events.

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.

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.