ABSTRACT
Context. Children and young people with life-limiting or life-threatening conditions and their families are potentially vulnerable during COVID-19 lockdowns due to pre-existing high clinical support needs and social participation limitations. Objectives. To explore the impact of the COVID-19 pandemic and lockdowns on this population. Methods. Sub-analysis of an emergent COVID-19 related theme from a larger semi-structured interview study investigating priority pediatric palliative care outcomes. One hundred and six United Kingdom-wide purposively-sampled Children and young people with life-limiting or life-threatening conditions, parent/carers, siblings, health professionals, and commissioners. Results. COVID-19 was raised by participants in 12/44 interviews conducted after the United Kingdom's first confirmed COVID-19 case. Key themes included loss of vital social support, disruption to services important to families, and additional psychological distress. Conclusion. Continued delivery of child- and family-centered palliative care requires innovative assessment and delivery of psycho-social support. Disruptions within treatment and care providers may compound support needs, requiring cordination for families facing multiagency delays. (C) 2022 The Authors. Published by Elsevier Inc. on behalf of American Academy of Hospice and Palliative Medicine.
ABSTRACT
Background/aims: Children and young people (CYP) with life-limiting or life-threatening conditions (LLLTC) represent a group with complex care needs that are met by multiple services and thus may be subject to particular vulnerabilities. Aim: To explore the impact of the COVID-19 pandemic and lockdowns on CYP with LLLTC and their families in the UK. Methods: Sub-analysis of an emergent COVID-19 theme from a larger UK-wide semi-structured interview study investigating priority paediatric palliative care outcomes with key stakeholders (n=106 participants). Results: COVID-19 was raised in 12/44 interviews conducted after the UK's first confirmed COVID-19 case. CYP with LLLTC and their families had to shield during lockdowns and faced additional challenges regarding service provision changes, appointment cancellation, delays in necessary home adaptations, and loss of both respite and in-home carers. This increased the workload of care on other family members and was compounded by loss of friend and family support networks, negatively impacting their psychological wellbeing. Many families were worried about COVID- 19, but for CYP whose LLLTC increased vulnerability to infection, this was intensified. Conclusions: Continued delivery of child- and family-centred palliative care requires innovative assessment and delivery of psycho-social support. Disruptions within treatment and care providers may compound support needs, requiring co-ordination for families facing multi-agency delays. (Table Presented).
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Background/aims: Recent systematic review of symptom management for adult COVID-19 patients approaching end of life (Heath, 2021), identified 7 studies (493 patients);only 4 reported if symptom management was effective. Over 2/3rds patients needed subcutaneous infusion for symptom control. We aimed to identify if subcutaneous infusions for adult COVID-19 patients approaching end of life was associated with improved symptoms. Methods: Two UK acute hospitals. Survey of all adult patients with COVID-19 seen 1st April 2020 to 31st March 2021 by the hospital advisory palliative care teams. Symptom data was prospectively collected. Approved by the clinical audit committee. Results: 252 COVID-19 patients;mean age 78.9 yrs (range 42-98), 56% female;mean duration of care 3.2 days (median 3, range 1-35). 200 (79.4%) died in hospital;25 (9.9%) were discharged and remained in hospital;12 (4.8%) were discharged to inpatient hospice care;15 (5.9%) to own/care home. 147 (58.3%) patients required continuous subcutaneous infusion for symptoms;of these, 36 (24.5%) had pain when first seen;82 (55.8%) had breathlessness;92 (62.6%) had agitation/ distress. Of those who had or developed pain (n=43), 26 (60.5%) improved with morphine or oxycodone infusion;17 (39.5%) worse or unknown. Of those who had or developed breathlessness (n=82), 50 (61.0%) improved with morphine or oxycodone infusion;32 (39.0%) worse or unknown. Of those who had or developed agitation/distress (n=92), 50 (54.3%) improved with midazolam, haloperidol, or levomepromazine infusion;42 (45.6%) worse or unknown. Mean doses were: morphine 14.2mg/day (range 5-60mg);oxycodone 21.4mg/day (range 5-80mg);midazolam 15.4mg/day (range 5-80mg);haloperidol 2.4mg (range 1-5mg);levomepromazine 23.75mg (range 6.25-50mg). Conclusions: Despite deteriorating illness, over half of all patients managed with often low doses of common medicines administered by subcutaneous infusion had improvement of their symptoms.
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Background/aims: The proportion of home deaths has increased during the COVID-19 pandemic. Most patients prefer to die at home. However, >75% of time falls outside of normal working hours (out-of-hours), and community services for palliative patients out-of-hours are variable and the best evidence-based models of care have not been determined. This study aimed to establish expert consensus on the most important components of out-of-hours community palliative care services. Methods: A two round Delphi study was conducted following the CREDES guidance (Guidance on Conducting and REporting DElphi Studies in palliative care).The first round listed 68 components generated from systematic literature reviewing, focus groups with healthcare professionals, and patient and public involvement (PPI) consultation. Components deemed 'essential' by over 70% of respondents were refined and carried forward to a second round, where participants were asked to rank each component on a five-point Likert scale. The threshold for consensus was median 5, interquartile range ≤1. Participants were community specialist palliative care health professionals, district nurses and general practitioners, patients, and family carers with experience of providing/receiving care out-of-hours at home. Results: 54 participants completed round 1;46 components met consensus. 44 participants completed round 2;45 refined components met consensus including: prescription, delivery and administration of medicines;district and community nurse visits;shared electronic patient records and advance care plans, all reaching highest consensus. There was little disagreement between healthcare professionals and PPI although home visits from out-of-hours general practitioners did not reach consensus among PPI but did among healthcare professionals. Conclusions: These findings provide valuable evidence for service provision, future service design, and research in evaluating models of care.
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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.
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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: 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: The disproportionately high death rate of those from ethnic minority groups from COVID-19 is well documented. Little is known about how palliative care services have responded. Aims: To map and develop insights into the response of palliative care services caring for patients and families from ethnic minority groups during the COVID-19 pandemic. Methods: (design, data collection, analysis): Cross-sectional on-line survey of UK palliative care services' response to COVID-19. Quantitative data were summarised descriptively and chi-square tests used to explore relationships between categorical variables. Open-ended responses were analysed using reflexive thematic analysis. Results: 93/277 (34%) responding palliative care services reported on care for COVID-19 patients from ethnic minority groups (60/123 (49%) hospital palliative care teams and 35/152 (23%) hospice inpatient teams). Nearly two-thirds (59%) of services offered care across multiple settings. Services who supported those from ethnic minority groups were more likely to have hospital palliative care teams (χ2 =15.21, p <0.001) and less likely to have inpatient hospice (χ2 = 30.11, p <0.001) or home palliative care teams (χ2 = 7.05, p= 0.008). 61/93 (66%) responding services stated there was no difference in how they supported or reached ethnic minority groups. Five main themes were identified from free-text comments: 1) disproportionate adverse impact of restricted visiting 2) compounded communication challenges 3) unmet religious and faith needs 4) mistrust of services and 5) equal but inequitable service response. Conclusion / Discussion: Policies introduced during the COVID-19 pandemic may have disproportionately adversely impacted those from ethnic minority groups. The palliative care response may have been both unequal and inequitable. The traditional focus of personalised care is not enough. We provide urgent recommendations for service providers and policymakers.