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1.
BMJ Supportive & Palliative Care ; 13(Suppl 4):A28, 2023.
Artigo em Inglês | ProQuest Central | ID: covidwho-2324845

RESUMO

BackgroundConsideration and documentation of where individual patients want to die is an important component of advance care planning and helps facilitate care aligned with patients' wishes.AimTo examine factors associated with recording a preferred place of death in Coordinate My Care, a large Electronic Palliative Care Coordination System in London.MethodsAdults with a Coordinate My Care Record, between 01/01/2018 and 05/03/2021 were included. Logistic regression modelling was used to identify clinical, social and demographic factors associated with documenting preference for place of death. Timing of record creation (pre and during the Covid-19 pandemic) was also included.Results72,591 records were analysed (52,006 (71.6%) with a recorded preferred place of death and 20,585 (28.4%) without). Individuals with a recorded preferred place of death were more likely to be older (Aged 80+ compared to <80) OR: 1.19, CI 1.14 – 1.24), less functionally independent (WHO performance status 4 compared to 1, OR: 1.28, CI 1.19 – 1.37), have a ‘Do Not Attempt Cardio-Pulmonary Resuscitation' status (OR: 1.70, CI 1.60 – 1.80), be from least deprived areas (compared to most deprived, OR: 1.08, CI 1.01 – 1.16), live in a care home (OR:1.42, CI 1.35 – 1.50), create their record in the General Practice setting (compared to at an hospital setting OR: 1.42, CI 1.34 – 1.53) and have created their record during the initial wave of the pandemic (compared to pre-pandemic OR: 1.56, CI 1.49 – 1.63).ConclusionsHealth status, living and socio-economic circumstances and the Covid-19 pandemic were associated with whether or not patients had a documented preference for place of death. This has implications for professional training and patient empowerment in terms of having conversations about what matters most to patients at the end of life and how to provide patient centred end-of-life care.

2.
BMJ Supportive & Palliative Care ; 13(Suppl 4):A28, 2023.
Artigo em Inglês | ProQuest Central | ID: covidwho-2324844

RESUMO

BackgroundAt 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.MethodsRetrospective 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.Results11,913 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=1.51, 95% CI 1.17 to 1.93), a Ceiling of Treatment for Symptomatic Treatment (when compared to Full active treatment, OR=3.52, 95% CI 2.77 to 4.50), documented family discussions regarding resuscitation recommendations (OR=1.51, 95% CI 1.33 to 1.72) and 2+ non-urgent care record views in the 30 days before death (OR=1.27, 95% CI 1.13 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).ConclusionsModifiable 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.

3.
BMJ Supportive & Palliative Care ; 13(Suppl 4):A13, 2023.
Artigo em Inglês | ProQuest Central | ID: covidwho-2324843

RESUMO

BackgroundMortality forecasts associated with COVID-19 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.MethodsA retrospective cohort study, comparing the creation, content and use of Coordinate My Care (CMC) records in London prior to and during the onset of COVID-19. Records for people aged 18+, created and published in pre-pandemic 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 descriptive statistics.Results56,343 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 4 (34.8% vs 44.2% pre pandemic, P<0.005). More people who created records during W1 had an estimated prognosis of 1 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 Treatment Ceiling 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.ConclusionsA 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.

4.
Palliat Med ; 37(7): 1034-1039, 2023 Jul.
Artigo em Inglês | MEDLINE | ID: covidwho-2298659

RESUMO

BACKGROUND: The number and proportion of home deaths in the UK increased during the Covid-19 pandemic. It is not known whether these changes were experienced disproportionately by people from different socioeconomic groups. AIM: To examine the association between home death and socioeconomic position during the Covid-19 pandemic, and how this changed between 2019 and 2020. DESIGN: Retrospective cohort study using population-based individual-level mortality data. SETTING/PARTICIPANTS: All registered deaths in England, Wales, Scotland and Northern Ireland. The proportion of home deaths between 28th March and 31st December 2020 was compared with the same period in 2019. We used Poisson regression models to evaluate the association between decedent's area-based level of deprivation and risk of home death, as well as the interaction between deprivation and year of death, for each nation separately. RESULTS: Between the 28th March and 31st December 2020, 409,718 deaths were recorded in England, 46,372 in Scotland, 26,410 in Wales and 13,404 in Northern Ireland. All four nations showed an increase in the adjusted proportion of home deaths between 2019 and 2020, ranging from 21 to 28%. This increase was lowest for people living in the most deprived areas in all nations, with evidence of a deprivation gradient in England. CONCLUSIONS: The Covid-19 pandemic exacerbated a previously described socioeconomic inequality in place of death in the UK. Further research to understand the reasons for this change and if this inequality has been sustained is needed.


Assuntos
COVID-19 , Humanos , Estudos Retrospectivos , Pandemias , Inglaterra/epidemiologia , País de Gales/epidemiologia
5.
BMJ Supportive & Palliative Care ; 13(Suppl 3):A33, 2023.
Artigo em Inglês | ProQuest Central | ID: covidwho-2271565

RESUMO

BackgroundThe consideration, recording and sharing of where individual patients would prefer to die are core elements of advance care planning and help ensure care is in keeping with patients' wishes.AimTo explore the factors associated with recording a preferred place of death in Coordinate My Care, a large Electronic Palliative Care Coordination System in London.MethodsAdults who created a Coordinate My Care record between 01/01/2018 and 05/03/2021 were included. Multivariate logistic regression modelling was used to identify demographic and clinical factors associated with documenting a preference for place of death, as well as timing (before and during the COVID-19 pandemic) and setting of record creationResults72,591 records were included (52,006 (71.6%) with a recorded preferred place of death and 20,585 (28.4%) without). Individuals with a recorded preferred place of death were more likely to be aged over 80 (compared to <80) OR: 1.19, CI 1.14 – 1.24), require assistance for their functional needs (WHO performance status 4 compared to 1, OR: 1.28, CI 1.19 – 1.37), have a ‘Do Not Attempt Cardio-Pulmonary Resuscitation' status (OR: 1.70, CI 1.60 – 1.80), be from the least deprived areas (compared to most deprived, OR: 1.08, CI 1.01 – 1.16), live in a care home (OR:1.42, CI 1.35 – 1.50), created their record during the first wave of the pandemic (compared to pre-pandemic OR: 1.56, CI 1.49 – 1.63), and create their record in the General Practice setting (compared to at an hospital setting OR: 1.42, CI 1.34 – 1.53).ConclusionsPeople's health and socio-economic status, and the COVID-19 pandemic, were associated with recording a preference for place of death. When exploring what matters most to people approaching the end of their lives and providing patient centred end-of-life care, these factors have important implications for patient empowerment and professional training.

6.
Health Qual Life Outcomes ; 21(1): 29, 2023 Mar 24.
Artigo em Inglês | MEDLINE | ID: covidwho-2262990

RESUMO

BACKGROUND: Patient-centred measures to capture symptoms and concerns have rarely been reported in severe COVID. We adapted and tested the measurement properties of the proxy version of the Integrated Palliative care Outcome Scale-IPOS-COV for severe COVID using psychometric approach. METHODS: We consulted experts and followed consensus-based standards for the selection of health status measurement instruments and United States Food and Drug Administration guidance for adaptation and analysis. Exploratory Factor Analysis and clinical perspective informed subscales. We tested the internal consistency reliability, calculated item total correlations, examined re-test reliability in stable patients, and also evaluated inter-rater reproducibility. We examined convergent and divergent validity of IPOS-COV with the Australia-modified Karnofsky Performance Scale and evaluated known-groups validity. Ability to detect change was examined. RESULTS: In the adaptation phase, 6 new items were added, 7 items were removed from the original measure. The recall period was revised to be the last 12-24 h to capture fast deterioration in COVID. General format and response options of the original Integrated Palliative care Outcome Scale were preserved. Data from 572 patients with COVID from across England and Wales seen by palliative care services were included. Four subscales were supported by the 4-factor solution explaining 53.5% of total variance. Breathlessness-Agitation and Gastro-intestinal subscales demonstrated good reliability with high to moderate (a = 0.70 and a = 0.67) internal consistency, and item-total correlations (0.62-0.21). All except the Flu subscale discriminated well between patients with differing disease severity. Inter-rater reliability was fair with ICC of 0.40 (0.3-0.5, 95% CI, n = 324). Correlations between the subscales and AKPS as predicted were weak (r = 0.13-0.26) but significant (p < 0.01). Breathlessness-Agitation and Drowsiness-Delirium subscales demonstrated good divergent validity. Patients with low oxygen saturation had higher mean Breathlessness-Agitation scores (M = 5.3) than those with normal levels (M = 3.4), t = 6.4 (186), p < 0.001. Change in Drowsiness-Delirium subscale correctly classified patients who died. CONCLUSIONS: IPOS-COV is the first patient-centred measure adapted for severe COVID to support timely management. Future studies could further evaluate its responsiveness and clinical utility with clinimetric approaches.


Assuntos
COVID-19 , Delírio , Humanos , Reprodutibilidade dos Testes , Qualidade de Vida , Cuidados Paliativos , Psicometria , Inquéritos e Questionários
7.
Front Public Health ; 11: 1058736, 2023.
Artigo em Inglês | MEDLINE | ID: covidwho-2252887

RESUMO

Introduction: Little consideration has been given to how the provision of palliative and end-of-life care in care homes was affected by COVID-19. The aims of this study were to: (i) investigate the response of UK care homes in meeting the rapidly increasing need for palliative and end-of-life care during the COVID-19 pandemic and (ii) propose policy recommendations for strengthening the provision of palliative and end-of-life care within care homes. Materials and methods: A mixed methods observational study was conducted, which incorporated (i) an online cross-sectional survey of UK care homes and (ii) qualitative interviews with care home practitioners. Participants for the survey were recruited between April and September 2021. Survey participants indicating availability to participate in an interview were recruited using a purposive sampling approach between June and October 2021. Data were integrated through analytic triangulation in which we sought areas of convergence, divergence, and complementarity. Results: There were 107 responses to the survey and 27 interviews. We found that (i) relationship-centered care is crucial to high-quality palliative and end-of-life care within care homes, but this was disrupted during the pandemic. (ii) Care homes' ability to maintain high-quality relationship-centered care required key "pillars" being in place: integration with external healthcare systems, digital inclusion, and a supported workforce. Inequities within the care home sector meant that in some services these pillars were compromised, and relationship-centered care suffered. (iii) The provision of relationship-centered care was undermined by care home staff feeling that their efforts and expertise in delivering palliative and end-of-life care often went unrecognized/undervalued. Conclusion: Relationship-centered care is a key component of high-quality palliative and end-of-life care in care homes, but this was disrupted during the COVID-19 pandemic. We identify key policy priorities to equip care homes with the resources, capacity, and expertise needed to deliver palliative and end-of-life care: (i) integration within health and social care systems, (ii) digital inclusivity, (iii) workforce development, (iv) support for care home managers, and (v) addressing (dis)parities of esteem. These policy recommendations inform, extend, and align with policies and initiatives within the UK and internationally.


Assuntos
COVID-19 , Assistência Terminal , Humanos , Pandemias , Estudos Transversais , COVID-19/epidemiologia , Assistência Terminal/métodos , Reino Unido
9.
BMC Palliat Care ; 21(1): 176, 2022 Oct 10.
Artigo em Inglês | MEDLINE | ID: covidwho-2064782

RESUMO

BACKGROUND: Independent charitably funded hospices have been an important element of the UK healthcare response to the COVID-19 pandemic. Hospices usually have different funding streams, procurement processes, and governance arrangements compared to NHS provision, which may affect their experiences during the COVID-19 pandemic. The aim of this study is to understand the challenges faced by charitably funded hospices during the COVID-19 pandemic. METHODS: Eligible Organisations providing specialist palliative or hospice care completed the online CovPall survey (2020) which explored their response to the COVID-19 pandemic. Eligible organisations were then purposively selected to participate in interviews as part of qualitative case studies (2020-21) to understand challenges in more depth. Free-text responses from the survey were analysed using content analysis and were categorised accordingly. These categorisations were used a priori for a reflexive thematic analysis of interview data. RESULTS: 143 UK independent charitably funded hospices completed the online CovPall survey. Five hospices subsequently participated in qualitative case studies (n = 24 staff interviews). Key themes include: vulnerabilities of funding; infection control during patient care; and bereavement support provision. Interviewees discussed the fragility of income due to fundraising events stopping; the difficulties of providing care to COVID-19 and non-COVID-19 patients within relatively small organisations; and challenges with maintaining the quality of bereavement services. CONCLUSION: Some unique care and provision challenges during the COVID-19 pandemic were highlighted by charitably funded hospices. Funding core services charitably and independently may affect their ability to respond to pandemics, or scenarios where resources are unexpectedly insufficient.


Assuntos
COVID-19 , Cuidados Paliativos na Terminalidade da Vida , Hospitais para Doentes Terminais , Humanos , Cuidados Paliativos/métodos , Pandemias
10.
BMJ Support Palliat Care ; 12(4): 439-447, 2022 Dec.
Artigo em Inglês | MEDLINE | ID: covidwho-2032545

RESUMO

OBJECTIVES: To describe multinational prescribing practices by palliative care services for symptom management in patients dying with COVID-19 and the perceived effectiveness of medicines. METHODS: We surveyed specialist palliative care services, contacted via relevant organisations between April and July 2020. Descriptive statistics for categorical variables were expressed as counts and percentages. Content analysis explored free text responses about symptom management in COVID-19. Medicines were classified using British National Formulary categories. Perceptions on effectiveness of medicines were grouped into five categories; effective, some, limited or unclear effectiveness, no effect. RESULTS: 458 services responded; 277 UK, 85 rest of Europe, 95 rest of the world, 1 missing country. 358 services had managed patients with confirmed or suspected COVID-19. 289 services had protocols for symptom management in COVID-19. Services tended to prescribe medicines for symptom control comparable to medicines used in people without COVID-19; mainly opioids and benzodiazepines for breathlessness, benzodiazepines and antipsychotics for agitation, opioids and cough linctus for cough, paracetamol and non-steroidal anti-inflammatory drugs for fever, and opioids and paracetamol for pain. Medicines were considered to be mostly effective but varied by patient's condition, route of administration and dose. CONCLUSIONS: Services were largely consistent in prescribing for symptom management in people dying with COVID-19. Medicines used prior to COVID-19 were mostly considered effective in controlling common symptoms.


Assuntos
COVID-19 , Cuidados Paliativos , Humanos , Acetaminofen , Tosse , Benzodiazepinas
11.
J Pain Symptom Manage ; 64(4): 377-390, 2022 10.
Artigo em Inglês | MEDLINE | ID: covidwho-1907348

RESUMO

CONTEXT: Evidence of symptom control outcomes in severe COVID is scant. OBJECTIVES: To determine changes in symptoms among people severely ill or dying with COVID supported by palliative care, and associations with treatments and survival. METHODS: Multicentre cohort study of people with COVID across England and Wales supported by palliative care services, during the pandemic in 2020 and 2021. We analysed clinical, demographic and survival data, symptom severity at baseline (referral to palliative care, first COVID assessment) and at three follow-up assessments using the Integrated Palliative care Outcome Scale - COVID version. RESULTS: We included 572 patients from 25 services, mostly hospital support teams; 496 (87%) were newly referred to palliative care with COVID, 75 (13%) were already supported by palliative care when they contracted COVID. At baseline, patients had a mean of 2.4 co-morbidities, mean age 77 years, a mean of five symptoms, and were often bedfast or semiconscious. The most prevalent symptoms were: breathlessness, weakness/lack of energy, drowsiness, anxiety, agitation, confusion/delirium, and pain. Median time in palliative care was 46 hours; 77% of patients died. During palliative care, breathlessness, agitation, anxiety, delirium, cough, fever, pain, sore/dry mouth and nausea improved; drowsiness became worse. Common treatments were low dose morphine and midazolam. Having moderate to severe breathlessness, agitation and multimorbidity were associated with shorter survival. CONCLUSION: Symptoms of COVID quickly improved during palliative care. Breathlessness, agitation and multimorbidity could be used as triggers for timelier referral, and symptom guidance for wider specialities should build on treatments identified in this study.


Assuntos
COVID-19 , Delírio , Idoso , COVID-19/terapia , Estudos de Coortes , Dispneia , Humanos , Midazolam , Morfina , Dor , Cuidados Paliativos
12.
BMJ Supportive & Palliative Care ; 12(Suppl 2):A20, 2022.
Artigo em Inglês | ProQuest Central | ID: covidwho-1874668

RESUMO

BackgroundMortality predictions as the COVID-19 pandemic began highlighted a need to prepare adults for possible severe illness, encouraging engagement with Advance Care Planning (ACP).AimTo explore ACP activity and engagement during the COVID-19 pandemic.MethodsA retrospective cohort study, comparing the creation, content and use of Coordinate My Care (CMC) records, the Electronic Palliative Care Co-ordination System in London, during and prior to the onset of COVID-19. Records for patients aged 18+, created and published in the pre-pandemic period (2018–2019) and ‘wave 1’ (W1) of COVID-19 (20/03/20–04/07/20) were included. Demographics, the ACP-related content, and the use of CMC records created were compared using descriptive statistics.Results56,343 records were included (35,108 pre-pandemic period and 21,235 W1). During W1, the mean records created each week increased by 296.9% (P<0.005). More people creating records at this time were aged below 80 (39.9% vs 35.1% pre-pandemic, P<0.005) and had WHO performance status 0–1 (17.7% vs 11.63% pre pandemic, P<0.005). Less people who created records during W1 had an estimated prognosis of days - weeks (9.0% vs 16.7% pre-pandemic, P<0.005), were ‘Not For Resuscitation’ (61.8% vs 70.3% pre-pandemic, P<0.005) and had a Ceiling of Treatment of ‘Symptomatic Treatment Only’ (8.1% vs 14.0%, P<0.005). More patients 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.ConclusionA marked increase in ACP activity is shown during wave 1 of the pandemic. Amplified engagement, provision and awareness at this time is suggested by increased use among younger, more independent patients with longer prognoses and a higher preference for hospital care creating records in W1 compared to before the pandemic.

13.
J R Soc Med ; 115(6): 220-230, 2022 06.
Artigo em Inglês | MEDLINE | ID: covidwho-1673700

RESUMO

OBJECTIVE: To explore the experiences of, and impact on, staff working in palliative care during the COVID-19 pandemic. DESIGN: Qualitative multiple case study using semi-structured interviews between November 2020 and April 2021 as part of the CovPall study. Data were analysed using thematic framework analysis. SETTING: Organisations providing specialist palliative services in any setting. PARTICIPANTS: Staff working in specialist palliative care, purposefully sampled by the criteria of role, care setting and COVID-19 experience. MAIN OUTCOME MEASURES: Experiences of working in palliative care during the COVID-19 pandemic. RESULTS: Five cases and 24 participants were recruited (n = 12 nurses, 4 clinical managers, 4 doctors, 2 senior managers, 1 healthcare assistant, 1 allied healthcare professional). Central themes demonstrate how infection control constraints prohibited and diluted participants' ability to provide care that reflected their core values, resulting in experiences of moral distress. Despite organisational, team and individual support strategies, continually managing these constraints led to a 'crescendo effect' in which the impacts of moral distress accumulated over time, sometimes leading to burnout. Solidarity with colleagues and making a valued contribution provided 'moral comfort' for some. CONCLUSIONS: This study provides a unique insight into why and how healthcare staff have experienced moral distress during the pandemic, and how organisations have responded. Despite their experience of dealing with death and dying, the mental health and well-being of palliative care staff was affected by the pandemic. Organisational, structural and policy changes are urgently required to mitigate and manage these impacts.


Assuntos
COVID-19 , Pessoal de Saúde/psicologia , Humanos , Cuidados Paliativos , Pandemias , Pesquisa Qualitativa
14.
BMJ Supportive & Palliative Care ; 12(Suppl 1):A21, 2022.
Artigo em Inglês | ProQuest Central | ID: covidwho-1673498

RESUMO

IntroductionPatient and Public involvement (PPI) is essential to ensure research is relevant, patient-focused and of high quality. Social distancing recommendations during the COVID-19 pandemic affected how PPI members engaged with research teams.AimsTo describe and evaluate PPI in a retrospective study evaluating 73,675 advance care planning records within a large Electronic Palliative Care Coordination System, Coordinate My Care, conducted during the COVID-19 pandemic.MethodPPI was evaluated against each of the six UK Standards for Public Involvement.ResultsInclusive Opportunities: The project was presented to the Patient, Public and Carers Research Review Panel of the Royal Marsden (PPCRRP) at its conception. Three members offered their involvement and continued as co-investigators throughout the project. The study was supported by a National Institute for Health Research grant.Working Together: Following COVID-19 restrictions, meetings were held virtually. While this enhanced accessibility, some important aspects of working together in person were diminished. PPI helped shape the study design, research applications, data interpretation and dissemination of findings at conferences and in journal publications.Support and learning: The PPCRRP provided a supportive and educational infrastructure for our PPI members. Potential knowledge gaps were anticipated with appropriate teaching within discussions. Conversations about end-of-life care were sensitively managed.Communication: Regular communication and engagement in plain language were maintained throughout the research by email and during virtual meetings.Governance: Strong PPI presence in research committees within the organisation.ConclusionImpact, lessons learned and conclusions: PPI enhanced the relevance, patient-centeredness and quality of this study reinforcing the important contribution of PPI within palliative care research. Social distancing constraints meant involvement was entirely virtual enabling increased access. The emotive subject matter that is frequently discussed in palliative research was addressed safely and sensitively. PPI can continue in a virtual sphere;further work is needed to evaluate PPI experience and ensure appropriate support is available.

15.
J Palliat Med ; 25(3): 465-471, 2022 03.
Artigo em Inglês | MEDLINE | ID: covidwho-1585195

RESUMO

Objectives: To identify factors associated with palliative care services being busier during Covid-19. Methods: Cross-sectional online survey of UK palliative care services (April to July 2020) (CovPall). Ethical approval was received from King's College London Research Ethics committee (LRS-19/20-18541). The primary outcome was change in busyness (five-point ordinal scale). Ordinal logistic regression investigated factors associated with the primary outcome. Results: Of 277 responses, 71 (26%) reported being a lot more busy, 62 (22%) slightly more, 53 (19%) about the same, 50 (18%) slightly less, and 28 (10%) much less busy. Increased business was associated with homecare services (odds ratio [OR] 1.93, 95% confidence interval [CI] 1.15-3.25), nursing care at home (OR 3.24, 95% CI 1.70-6.19), publicly managed services (OR 2.20, 95% CI 1.11-4.34), Covid-19 cases (OR 1.01, 95% CI 1.00-1.01), and staff shortages (OR 2.71, 95% CI 1.64-4.48). Conclusion: Services providing community care, and publicly managed services, may have been better able to respond to escalating needs during Covid-19. This has potential implications for both service delivery and funding models.


Assuntos
COVID-19 , Estudos Transversais , Humanos , Cuidados Paliativos , Pandemias , SARS-CoV-2
16.
Palliat Med ; 36(2): 319-331, 2022 02.
Artigo em Inglês | MEDLINE | ID: covidwho-1582706

RESUMO

BACKGROUND: Palliative rehabilitation involves multi-professional processes and interventions aimed at optimising patients' symptom self-management, independence and social participation throughout advanced illness. Rehabilitation services were highly disrupted during the Covid-19 pandemic. AIM: To understand rehabilitation provision in palliative care services during the Covid-19 pandemic, identifying and reflecting on adaptative and innovative practice to inform ongoing provision. DESIGN: Cross-sectional national online survey. SETTING/PARTICIPANTS: Rehabilitation leads for specialist palliative care services across hospice, hospital, or community settings, conducted from 30/07/20 to 21/09/2020. FINDINGS: 61 completed responses (England, n = 55; Scotland, n = 4; Wales, n = 1; and Northern Ireland, n = 1) most frequently from services based in hospices (56/61, 92%) providing adult rehabilitation. Most services (55/61, 90%) reported rehabilitation provision becoming remote during Covid-19 and half reported reduced caseloads. Rehabilitation teams frequently had staff members on sick-leave with suspected/confirmed Covid-19 (27/61, 44%), redeployed to other services/organisations (25/61, 41%) or furloughed (15/61, 26%). Free text responses were constructed into four themes: (i) fluctuating shared spaces; (ii) remote and digitised rehabilitation offer; (iii) capacity to provide and participate in rehabilitation; (iv) Covid-19 as a springboard for positive change. These represent how rehabilitation services contracted, reconfigured, and were redirected to more remote modes of delivery, and how this affected the capacity of clinicians and patients to participate in rehabilitation. CONCLUSION: This study demonstrates how changes in provision of rehabilitation during the pandemic could act as a springboard for positive changes. Hybrid models of rehabilitation have the potential to expand the equity of access and reach of rehabilitation within specialist palliative care.


Assuntos
COVID-19 , Hospitais para Doentes Terminais , Adulto , Estudos Transversais , Humanos , Cuidados Paliativos , Pandemias , SARS-CoV-2
17.
Int J Health Policy Manag ; 2021 Sep 08.
Artigo em Inglês | MEDLINE | ID: covidwho-1478974

RESUMO

BACKGROUND: Volunteers are common within palliative care services, and provide support that enhances care quality. The support they provided, and any role changes, during the coronavirus disease 2019 (COVID-19) pandemic are unknown. The aim of this study is to understand volunteer deployment and activities within palliative care services, and to identify what may affect any changes in volunteer service provision, during the COVID-19 pandemic. METHODS: Multi-national online survey disseminated via key stakeholders to specialist palliative care services, completed by lead clinicians. Data collected on volunteer roles, deployment, and changes in volunteer engagement. Analysis included descriptive statistics, a multivariable logistic regression, and analysis of free-text comments using a content analysis approach. RESULTS: 458 respondents: 277 UK, 85 rest of Europe, and 95 rest of the world. 68.5% indicated volunteer use pre-COVID-19 across a number of roles (from 458): direct patient facing support (58.7%), indirect support (52.0%), back office (48.5%) and fundraising (45.6%). 11% had volunteers with COVID-19. Of those responding to a question on change in volunteer deployment (328 of 458) most (256/328, 78%) indicated less or much less use of volunteers. Less use of volunteers was associated with being an in-patient hospice, (odds ratio [OR]=0.15, 95% CI=0.07-0.3, P<.001). This reduction in volunteers was felt to protect potentially vulnerable volunteers, with policy changes preventing volunteer support. However, adapting was also seen where new roles were created, or existing roles pivoted to provide virtual support. CONCLUSION: Volunteers were mostly prevented from supporting many forms of palliative care which may have quality and safety implications given their previously central roles. Volunteer re-deployment plans are needed that take a more considered approach, using volunteers more flexibly to enhance care while ensuring safe working practices. Consideration needs to be given to widening the volunteer base away from those who may be considered to be most vulnerable to COVID-19.

18.
BMJ Support Palliat Care ; 2021 Sep 12.
Artigo em Inglês | MEDLINE | ID: covidwho-1405222

RESUMO

OBJECTIVES: To develop insights into response of palliative care services caring for people from ethnic minority groups during COVID-19. METHODS: Cross-sectional online survey of UK palliative care services response to COVID-19. Quantitative data were summarised descriptively and χ2 tests used to explore relationships between categorical variables. Free text comments were analysed using reflexive thematic analysis. RESULTS: 277 UK services responded. 168 included hospice teams (76% of all UK hospice teams). Services supporting those from ethnic minority groups were more likely to include hospital (p<0.001) and less likely to include hospice (p<0.001) or home care teams (p=0.008). 34% (93/277) of services had cared for patients with COVID-19 or families from ethnic minority groups. 66% (61/93) of these services stated no difference in how they supported or reached these groups during the pandemic.Three themes demonstrated impact of policy introduced during the pandemic, including: disproportionate adverse impact of restricted visiting, compounded communication challenges and unmet religious and faith needs. One theme demonstrated mistrust of services by ethnic minority groups, and the final theme demonstrated a focus on equal and individualised care. CONCLUSIONS: Policies introduced during the COVID-19 pandemic may have adversely impacted those from ethnic minority groups making these at-risk populations even more vulnerable. The palliative care response may have been equal but inequitable. During the para-COVID-19 period, systemic steps, including equality impact assessments, are urgently needed.

19.
Palliat Med ; 35(10): 1975-1984, 2021 12.
Artigo em Inglês | MEDLINE | ID: covidwho-1370928

RESUMO

BACKGROUND: Understanding patterns of mortality and place of death during the COVID-19 pandemic is important to help provide appropriate services and resources. AIMS: To analyse patterns of mortality including place of death in the United Kingdom (UK) (England, Wales, Scotland and Northern Ireland) during the COVID-19 pandemic to date. DESIGN: Descriptive analysis of UK mortality data between March 2020 and March 2021. Weekly number of deaths was described by place of death, using the following definitions: (1) expected deaths: average expected deaths estimated using historical data (2015-19); (2) COVID-19 deaths: where COVID-19 is mentioned on the death certificate; (3) additional non-COVID-19 deaths: above expected but not attributed to COVID-19; (4) baseline deaths: up to and including expected deaths but excluding COVID-19 deaths. RESULTS: During the analysis period, 798,643 deaths were registered in the UK, of which 147,282 were COVID-19 deaths and 17,672 were additional non-COVID-19 deaths. While numbers of people who died in care homes and hospitals increased above expected only during the pandemic waves, the numbers of people who died at home remained above expected both during and between the pandemic waves, with an overall increase of 41%. CONCLUSIONS: Where people died changed during the COVID-19 pandemic, with an increase in deaths at home during and between pandemic waves. This has implications for planning and organisation of palliative care and community services. The extent to which these changes will persist longer term remains unclear. Further research could investigate whether this is reflected in other countries with high COVID-19 mortality.


Assuntos
COVID-19 , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Humanos , Pandemias , SARS-CoV-2 , Reino Unido
20.
Palliat Med ; 35(8): 1514-1518, 2021 09.
Artigo em Inglês | MEDLINE | ID: covidwho-1261243

RESUMO

BACKGROUND: People from ethnic minority groups and deprived socioeconomic backgrounds have worse outcomes from COVID-19. AIM: To examine associations between ethnicity and deprivation with timing of palliative care referral for inpatients with COVID-19. DESIGN: Service evaluation of consecutive patients with COVID-19 referred to palliative care. Sociodemographic (including age, sex, Index of Multiple Deprivation, ethnicity coded as White/non-White) and clinical variables were described. The primary outcome was timing of referral to palliative care. Associations between ethnicity and socioeconomic deprivation with the primary outcome were explored using multivariable regression. SETTING/PARTICIPANTS: Patients with COVID-19 referred to a hospital palliative care service across two London hospitals February-May 2020. RESULTS: A total of 334 patients were included. 119 (36%) were from a non-White ethnic group; most commonly Black British (77, 23%) and Asian British (26, 8%). 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 1.36-1.90) but not ethnicity (IRR = 0.96, 95% CI 0.87-1.06). CONCLUSIONS: This large service evaluation showed no evidence that patients from ethnic minority or more deprived socioeconomic groups had longer time to palliative care referral. Ongoing data monitoring is essential for equitable service delivery.


Assuntos
COVID-19 , Etnicidade , Hospitais , Humanos , Masculino , Grupos Minoritários , Cuidados Paliativos , SARS-CoV-2 , Fatores Socioeconômicos
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