An Evaluation of End of Life Care Experiences in Care Homes in the UK During the Pandemic

Background/aims: Care homes in Europe have been profoundly impacted by the COVID-19 pandemic with increased resident mortality. They needed to respond to shifting government guidelines for infection control procedures and restrictions in visiting. This all occurred under the scrutiny of the media. Aim: to evaluate end of life a care experiences in care homes in the UK. Methods: A mixed method approach. We used a database of about 6000 care home residents were we could track when they interacted with health care services including community nursing input, admission to hospital (and A&E) and clinic appointments. We also conducted interviews (n=24) with care home staff, residents and families from 8 care homes which were analysed using framework analysis. Results: A large spike in deaths occurred in April/May 2020. This coincided with only about a quarter of outpatient appointments taking place. Inpatient admissions dropped by half and A&E attendance by a quarter. Community nursing input to care homes reduced by a third. Interviews suggested that staff were inundated with COVID-19 information via email but felt 'abandoned' with few nursing services operating in person. At the beginning of the pandemic some community nursing staff helped produce emergency care plans, usually over the phone, but some care homes interpreted this to mean residents were going to be 'left to die'. Care home staff felt guilt about deaths related to COVID-19 and this took a toll on their emotional well-being. This was exacerbated by needing to 'police' family visiting with residents who were actively dying. Conclusions: Care home residents experienced a dramatic reduction in services outside of the care home coupled with a large increase in deaths. Many staff wanted greater input from external services especially community nursing teams to support them.

Research on Advance Care Planning in Nursing Homes During the COVID-19 Pandemic

Introduction: Staff and the public have limited access to information about advance care planning. Yet, during the pandemic there was an urgency to complete advance care plans (ACP) in long term care facilities (LTCFs) or 'Emergency care plans' which focussed upon future care choices relating to hospital admission and resuscitation status. Materials and Methods: Three studies addressed ACP in care homes: Evaluating experiences of LTCFs during the pandemic including their experiences of ACP. Semi-structured interviews with staff (16), community staff (11), residents (3) and families (5) from 11 LTCFs analysed using thematic analysis. International implementation case study of ACP training for staff caring for residents with advanced dementia, which was adapted from in person to asynchronous online training during the pandemic. Evaluation interviews in the UK were conducted with staff (78) and families (34). Bespoke online training and informational resources about advance care planning during COVID-19 was developed for staff and families. Semistructured interviews conducted with families (37) and staff (35) from eight LTCFs. Findings: Staff were concerned about the initiation of ACPs from external agencies and why they were implemented. Staff felt abandoned thinking ACPs meant they were going to be left to manage on their own, adding to their emotional distress. Differences were found between the two training mechanisms, which will be discussed but related to mode of delivery. In study 3, the bespoke training, (https://covidacpcarehomes.com/care-staff/units-training/), was found to be accessible and easier to engage with compared to information from other agencies. Staff felt it gave them permission to engage in these conversations, recognise when a resident gave them cues to have an ACP discussion, when they needed input from senior staff. Staff revised their ACP procedures. Similarly, families felt emboldened to challenge decisions. They shared training with other family members, increasing dissemination. A section on supporting yourself was particularly well evaluated as this met the emotional burden staff and family had identified in study 1. Different implementation challenges were identified in study 2 and 3. Working remotely meant homes need to have appropriate and functioning technology. Building relationships with families was critical and challenging when engaging remotely. Recruiting and establishing meaningful relationships with staff and family carers was critical and challenging in the context of buy-in and willingness to participate. Study 3 involved skilling up staff whereas study 3 involved both skilling up and arranging a family conference, which was less successful perhaps due to the constraints of the pandemic. Conclusion: Whilst advance planning had initially raised concerns for staff, the training helped staff and families' understanding of advance care planning. Bespoke training was particularly well received but involving families remotely was challenging. It is possible for staff to be upskilled and do ACP during a pandemic, but it is difficult, and we need to be aware of the many contextual factors - including how studies can be designed to be workable in difficult circumstances. More research is needed on facilitators and barriers to ACP in LTCF both during a pandemic and more generally.

Improving Palliative Care Access for People From Ethnic Minorities During COVID-19 Pandemic: Findings From a Service Evaluation

Background/aims: A specialist palliative care service evaluation in an acute hospital during the first wave of COVID-19 showed that those from ethnic minority backgrounds, especially women, were referred later. Improvements in treatments, and operational and system-level changes to the palliative care service which were introduced to address this disparity, may have improved access for those from ethnic minorities. Aim: To assess the effectiveness of operational and system-level changes to the hospital specialist palliative care service, by examining care patterns and trends for those with COVID-19. Methods: Retrospective service evaluation comparing patients referred to an acute hospital palliative care service with confirmed COVID-19 infection either at the peak of the first (Mar-Apr 2020, W1) or second (Dec 2020-Feb 2021, W2) wave of the pandemic. Demographic, clinical characteristics, and outcomes data were collected and compared using statistical tests;generalised linear mixed models for modelling of elapsed time from admission to referral;and survival analysis for each wave. Results: Data from 165 patients (W1 = 60, W2 =105) were included. Overall, patients in W1 were referred earlier to palliative care than in W2, particularly in the first 8 days from admission. Receiving dexamethasone, anticoagulants and absence of dementia, hypertension, and fever were associated with longer time to referral. The delay in referral from W1 of Black and Asian patients of 2-4 days, accounting for 22%-44% of the overall time from admission to death, was no longer observable in W2. The Australian-modified Karnofsky Performance Status (HR < 0.92, upper CI < 0.97) and phase of illness (HR > 3, lower CI >2) were good predictors of survival in both waves. Conclusions: The delayed referrals for ethnic minorities were not seen in W2. Actions to integrate palliative care within organisational COVID-19 planning, engaging with minority ethnic groups, and educating the workforce on culturally sensitive approaches to care may have had a positive impact on access to palliative care.

Specialist Palliative Care Professionals' Experiences of Moral Distress during COVID-19: A Multiple Qualitative Case Study

Background: Internationally, COVID-19 has placed additional strain on already stretched health care systems. This has influenced how specialist palliative care organisations and their staff have been able to respond to clinical need in accordance with their professional values. Aims: To explore how COVID-19 impacted specialist palliative care staff and how organisations responded to the impact of the pandemic on staff well-being. Methods: Qualitative multiple case study, part of the CovPall study. Cases were English hospices providing specialist palliative care services in any setting. Semi structured interviews were carried out with hospice staff between 11/20-04/21, purposefully sampled by role, care setting and COVID-19 experience. Interviews were analysed using framework analysis. Results: Five cases (n=24 participants). Infection control constraints (e.g., visiting restrictions, PPE) prohibited and diluted participants' ability to provide care that reflected their core values. This resulted in staff experiencing moral distress. Despite organisational, team, and individual support strategies to address staff well-being, continually managing these constraints led to a 'crescendo effect' in which the impacts of moral distress (e.g., sadness, guilt, frustration, and fatigue) accumulated over time, sometimes leading to burnout. Some gained 'moral comfort' from solidarity with colleagues and making a valued contribution. Conclusions: This study provides a useful insight into why and how specialist palliative care staff experienced moral distress during COVID-19, and how organisations have responded. Despite their expertise in caring for the dying, staff well-being and mental health was affected by the pandemic. Prolonged experiences of moral distress has a detrimental impact on staff and the quality of care. Organisational, structural, and policy changes are urgently required to mitigate and manage these impacts.

Necessary discussions: The development of online resources to support advance care planning in nursing homes in a COVID-19 context

Aim or goal of the work: The Necessary Discussions project developed a COVID-centric advance care planning (ACP) online training resource for nursing homes, with the aim of improving resident care at the end of life during a COVID-19 outbreak. A bespoke website has been designed to deliver information to residents, family members and nursing home staff, with the aims of increasing awareness and understanding of advance care planning, and to support communication and shared decision-making. Design, methods and approach taken: Development of the website took place between late 2020 and early 2021, and was informed by a rapid review of existing literature and support from members of the project's Expert Reference Group, comprised of practitioners, academics and public involvement representatives. Existing ACP resources were synthesised and tailored for COVID-19. Results: The resulting website is accessible and engaging, offering a COVID-19 specific resource for advance care planning. Distinct modules provide information appropriate for care staff and family members. Supplementary videos were produced offering advice from experts in the field. Further reading and additional resources are linked to from the website, and there is a strategic emphasis on self-care alongside care provision. Conclusion / lessons learned: This project demonstrates how to develop accessible information for care staff and family members in a COVID-19 context. The project also identifies effective methods of virtual team working and group collaboration during COVID-19.

Factors associated with busyness among hospice and palliative care services during the COVID-19 pandemic: An international survey (COVPALL)

Background: Palliative care and hospice services responded to the Covid-19 pandemic, but it is not clear how their workload has been affected. Aim: To identify factors associated with busyness in UK palliative care services during the Covid-19 pandemic. Methods: Online survey of clinical leads of palliative care services to understand the palliative care response to COVID-19 (CovPall). Study population characteristics were described. Unadjusted and multivariable ordinal logistic regression investigated factors (type of service, management type, number of confirmed (by test) Covid-19 cases, region, staff shortages) associated with busyness. Busyness was measured using a five-point scale (a lot less busy, slightly less busy, about the same, slightly more busy, a lot more busy). Results: 277 UK respondents: 33 Scotland, 4 Northern Ireland, 15 Wales, 225 in nine regions of England. Services reported being a lot more busy (71, 26%), slightly more busy (62, 22%), about the same (53, 19%), slightly less busy (50, 18%), much less busy (28, 10%). Multivariable analysis showed the following factors were associated with increased busyness: being a specialist palliative home care service (OR 1.93, 95% CI 1.15-3.25), providing hands on nursing care at home or in the community (OR 3.24, 95% CI 1.70-6.19), confirmed number (by test) Covid-19 cases (OR 1.01, 95% CI 1.00-1.01), being a publicly managed (NHS) service (OR 2.20, 95% CI 1.11-4.34), and experiencing staff shortages (OR 2.71, 95% CI 1.64-4.48). Conclusion: Community services and those publicly managed (NHS services) experienced increased busyness during Covid-19 pandemic. This suggests these services may have been more able to shift resources to respond to increased needs and changing patient priorities during the pandemic. This has implications for future funding models for palliative care.