ABSTRACT
Background Anticipated severe illness at the start of the COVID-19 pandemic bought increased endorsement, awareness and provision of advance care planning in adults with serious illness. Place of death is often considered a surrogate quality indicator for end-of-life care. Aim To examine the impact of advance care planning on place of death for patients who died during the COVID-19 pandemic with a Coordinate My Care (CMC) record, the Electronic Palliative Care Coordination System currently commissioned in London. Methods Retrospective non-interventional cohort analysis of CMC records for patients aged over 18 who died between 20/03/20 and 05/03/21 with recorded place of death. Patient demographics, socio-economic position and advance care planning related factors associated with achieving preferred place of death were explored using logistic regression. Results 11,913 records were included. 76.9% patients died in their preference place of death (57.7% Home, 31.4% Care Home, 7.5% Hospice, 3.3% Hospital, 0.1% Other). A higher likelihood of dying in the preferred place was associated with a 'Not for resuscitation' (DNACPR) status (OR=1.55, 95% CI 1.23 to 1.95), a Ceiling of Treatment for 'Symptomatic Treatment' (when compared to 'Full active treatment', OR=3.55, 95% CI 2.78 to 4.53), discussions with family regarding resuscitation recommendations (OR=1.53, 95% CI 1.34 to 1.74) and at least 2 non-urgent care record views in the 30days before death (OR=1.27, 95% CI 1.23 to 1.43). Patients from areas of lower socio-economic position had a decreased likelihood of dying in their preferred place (OR= 0.65, 95% CI 0.54 to 0.79). Conclusion Components of Advance care planning carry potential to significantly influence place of death, even in times of crisis and when controlling for socio-economic and demographic determinants. Effective advance care planning is fundamental to achieving patient-centred, high-quality end-oflife care and factors relating to it must be considered in ongoing research on end-of-life outcomes.
ABSTRACT
Background/aims: COVID-19 has had a devastating impact on care homes, their residents and families, and staff. More than 40,000 UK care home residents have died from COVID-19;many more have experienced symptoms and distress. The aim was to explore experiences of care home staff of providing palliative and end-of-life care (PEoLC) during COVID-19, and make policy recommendations. Methods: Mixed methods study comprising 1) Online survey (in REDCap) of UK care home staff, identified through established networks. The survey was developed from a rapid literature review and included structured and free-text data. 2) Qualitative interviews with care home staff (identified from 1);findings analysed thematically to identify policy recommendations for improving PEoLC. Results: 107 survey responses from across UK;57 (53%) had onsite nursing care. 72 (67%) experienced COVID-19 outbreaks;48 (45%) reported staff shortages;75 (70%) reported staff stress. Challenges included assessing and managing physical symptoms (17, 16%), spiritual needs (26, 24%) and social/family needs (56, 52%). 26 (24%) reported quality of PEoLC fluctuated during the pandemic. 26 qualitative interviews were carried out. Themes: 1/ Workforce. Staff experienced multiple pressures (more deaths, staff sickness/bereavement, new roles), mitigated by adapting working patterns and living arrangements, providing emotional and practical support, and fostering a sense of partnership. 2/ Integration. Integration with GPs, palliative care teams, pharmacists and community nurses varied. Digital communications, shared records, hotlines, regular meetings and strong relationships facilitated good PEoLC. 3/ Legacy. Positive outcomes emerged from the rapid changes made, including a sense of empowerment, pride and confidence among staff. This was undermined by feeling under-recognised and undervalued. Conclusions: Improving PEoLC in care homes is a priority. Recognition of care home expertise, and improved integration with community services, are essential.
ABSTRACT
The UK has a global reputation for provision of high-quality palliative care. Yet hundreds of thousands of people die each year in the UK needing palliative care but not receiving it. And there are persistent - and increasing - inequalities in access to palliative care including by age, diagnosis, deprivation and ethnicity. Projections studies have shown large increases in the future palliative care needs which will be driven by ageing and dementia, populations that can be least likely to access palliative care. The COVID-19 pandemic provided a stress-test for palliative care. Over 150,000 people have died from COVID-19 in the UK to date. The place of death in the UK has shifted into the community, with a 41% increase in home deaths during 2020. Care home deaths increased three-folk during the first pandemic wave. However, data from primary care and care homes indicates poor integration of palliative and end of life care across care settings;and the experiences, care needs and outcomes of people dying in community settings during the pandemic have had little scrutiny. This presentation will draw on data from three research studies: the CovPall and CovPall-CareHomes studies, and the Marie Curie Better End of Life programme. Data from these three studies will be used to consider (i) what we learnt about provision of palliative and end of life care during the COVID-19 pandemic, and (ii) how this data has informed priorities for strengthening palliative care beyond the pandemic.
ABSTRACT
Background/aims: Mortality forecasts associated with COVID-19 pandemic stressed a need to prepare adults with advanced disease for possible severe illness and engage with Advance Care Planning (ACP). We aimed to examine ACP engagement and activity during the COVID-19 pandemic. Methods: A retrospective non-interventional cohort study, comparing the creation, content and use of Coordinate My Care (CMC) records that include an ACP component, in London, prior to and during the onset of COVID-19. Records for people aged 18+, created and published in prepandemic period (2018-2019) and 'wave 1' (W1) of COVID-19 (20/03/20- 04/07/20) were extracted. Demographics, ACP-related content and the use of CMC records created were analysed and compared using standard descriptive statistics. Results: 56,343 records were included, 35,108 from the pre-pandemic period and 21,235 records from W1. The average records created each week rose by 296.9% (P<0.005) in W1. There were fewer records in W1 for those aged 80 years (60.8% vs 64.9% pre-pandemic, P<0.005) and who had WHO performance status of 4 (34.8% vs 44.2% pre pandemic, P<0.005). More people who created records during W1 had an estimated prognosis of at least a year (73.3% vs 53.0% pre-pandemic, P<0.005), were “For Resuscitation” (38.2% vs 29.8% pre-pandemic, P<0.005) and had a Ceiling of Treatment of “Full Active Treatment” (32.4% vs 25.7%, P<0.005). More people in W1 listed hospital as their preferred place of care (PPC) and preferred place of death (PPD) (PPC: 13.3% vs 5.8% pre-pandemic, P<0.005. PPD: 14.0% vs 7.9%, P<0.005). Average monthly non-urgent and urgent record views rose by 320.3% (P=0.02) and 154.3% (P=0.01) in W1. Conclusions: A large uptake in engagement with ACP is demonstrated during the 1st wave of the pandemic. An increase in use among younger, more independent patients with longer prognoses, with a higher preference for hospital care creating records in W1 compared to before the pandemic, suggests heightened awareness and provision of ACP at this time.
ABSTRACT
Background/aims: At the beginning on the COVID-19 pandemic, advance care planning (ACP) was widely encouraged and endorsed for adults with serious illness to ensure their treatment and care preferences would be honoured, including location of death, often considered a surrogate quality indicator for end-of-life care. Coordinate My Care (CMC) represents the UK's largest Electronic Palliative Care Coordination System that comprises an ACP component. We aimed to examine the impact of ACP on place of death for people who died during the COVID-19 pandemic with a CMC record. Methods: Retrospective cohort analysis of CMC records for people aged over 18 who died between 20/03/20 and 05/03/21 with recorded place of death. Socio-demographic, clinical and ACP-related factors associated with achieving preferred place of death (PPD) were examined using logistic regression. Results: 11,913 records were included. 76.9% patients died in their preferred place location of death (57.7% Home, 31.4% Care Home, 7.5% Hospice, 3.3% Hospital, 0.1% Other). An increased likelihood of dying in PPD was associated with a 'Not for resuscitation' (DNACPR) status (OR=1.55, 95% CI 1.23 to 1.95), a Ceiling of Treatment for Symptomatic Treatment (when compared to Full active treatment, OR=3.55, 95% CI 2.78 to 4.53), documented family discussions regarding resuscitation recommendations (OR=1.53, 95% CI 1.34 to 1.74) and 2+ non-urgent care record views in the 30 days before death (OR=1.27, 95% CI 1.23 to 1.43). People from materially deprived areas had a decreased likelihood of dying in their PPD (OR= 0.65, 95% CI 0.54 to 0.79). Conclusions: Modifiable elements of ACP significantly influence place of death, even when controlling for socio-economic and demographic determinants. In times of crisis, effective ACP is central to delivering high quality end-of-life care;ACP related factors must be considered in ongoing research on end-of-life outcomes.
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Background: The COVID-19 pandemic has led to excess mortality globally. Understanding change in place of death during the pandemic is needed to help guide resource allocation and support for end-of-life care. Aims: To analyse the patterns of mortality and place of death in UK (England, Wales, Scotland and Northern Ireland) during the COVID-19 pandemic. Methods: Descriptive analysis of UK mortality data between March 2020 and February 2021. The weekly number of deaths in each nation was described by place of death using the following definitions: (1) Average deaths estimated using five years of historical data (2015-19);(2) Baseline deaths up to and including expected deaths but excluding COVID-19 deaths;(3) Deaths where COVID-19 is mentioned on the death certificate;(3) Additional deaths not attributed to COVID-19. Results: During the analysis period, there were 743,172 deaths in the UK, of which 135,716 were COVID-19 related and 17,672 were additional non-COVID deaths. There was variation in mortality between the UK nations with Wales having the highest rate of COVID-19 deaths at 229 per 100,000 population and Northern Ireland the lowest at 141 per 100,000 population. Deaths in care homes increased above baseline levels during the first and second waves of the pandemic but fell below baseline between waves, increasing the most in Wales by 29%. Hospital deaths increased overall by as much as 13% in England but fell by 1% in Scotland. Deaths at home remained above average throughout the study period with an overall increase of between 40-41%. In England and Wales, 15-30% fewer people died in hospices compared to baseline. Discussion: The COVID-19 pandemic has changed where people die in the UK. Notably a sustained increase in deaths at home has been seen, with implications for planning and organisation of palliative care and community services. Examination of place of death in other countries with high COVID-19 mortality is recommended.
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Background: The COVID-19 pandemic has resulted in high mortality in care homes. Little is known about provision of palliative and end of life care in care homes during the pandemic. Aims: To explore how care homes responded to COVID-19 with regards to palliative and end of life care. Methods: A systematic review of Medline, Embase, PsycINFO and Web of Science. Eligible papers focused on palliative care in care homes during the COVID-19 pandemic. Narrative analysis, with findings synthesised according to physical, social, psychological and spiritual domains of care. Results: Out of 521 papers, a total of 21 papers were included in the final review. 15 papers included the physical aspect of palliative care specifically regarding symptom control and anticipatory prescribing. 10 papers explored psychological needs, particularly regarding mental health conditions. 13 papers discussed the social aspect such as visitor restrictions, advanced care planning and hospital transfers. 7 papers explored the spiritual aspect including anticipatory grief and bereavement care. Only 4 papers out of the 21 discussed all 4 aspects of palliative care. Conclusion: Internationally, little research has focused on understanding provision of palliative and end of life care in care homes during COVID-19 pandemic. Most of the research published has focused on narrow areas of palliative care such as advanced care planning around future hospital transfers. More research is needed for provision of guidelines and policies to promote a holistic approach to palliative care in care homes during the pandemic.
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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.
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Background: COVID-19 has highlighted health inequalities experienced by people from ethnic minority groups and deprived socioeconomic backgrounds. It is unclear whether these characteristics are associated with later referral to palliative care. Aims: To examine the association between ethnicity, deprivation, and timing of palliative care referral for patients with COVID-19. Methods (design, data collection, analysis): Service evaluation using patient data from two London hospitals. Data on inpatients with confirmed COVID-19 referred to the hospital palliative care service February- May 2020 were included. Patients were coded into white and non-white ethnic groups. Sociodemographic (age, sex, Index of Multiple Deprivation, ethnic group) and clinical variables (Charlson comorbidity index, reason for admission) were described. The association between ethnicity and socioeconomic deprivation with timing of referral to palliative care (days from admission to referral) was explored using a multivariable Poisson regression model. Results: 334 patients were included. 119 (36%) were from a non-white ethnic group;most commonly Black British 77 (23%) and Asian British 26 (7.8%). Patients of non-white ethnicity were more likely to be younger, male and have higher levels of socioeconomic deprivation. A longer time between admission and palliative care referral was associated with male gender (IRR 1.23, 95% CI 1.14-1.34) and lower levels of socioeconomic deprivation (IRR=1.61, 95% CI 1.36-1.9). Non-white ethnicity was not associated with a difference in time to palliative care referral (IRR=0.96, 95% CI 0.87-1.05). Conclusion / discussion: In this large dual-centre case series of people with COVID-19, there was no evidence that patients from non-white ethnic groups or more deprived socioeconomic groups had longer time to palliative care referral. Ongoing monitoring of data is needed to ensure equitable delivery of services.