ABSTRACT
BackgroundPalliative care is an important component of healthcare in pandemics, contributing to symptom control, psychological support, and supporting triage and complex decision making. AimTo examine preparedness for, and impact of, the COVID-19 pandemic on hospices in Italy to inform the response in other countries. DesignCross-sectional telephone survey, carried out in March 2020. SettingSixteen Italian hospices, purposively sampled according to COVID-19 risk into high (more than 25 COVID-19 cases per 100,000 inhabitants), medium (15-25 cases per 100,000), and low risk (fewer than 15 cases per 100,000) regions. A brief questionnaire was developed to guide the interviews. Descriptive analysis was undertaken. ResultsSeven high risk, five medium risk and four low risk hospices provided data. Two high risk hospices had experienced COVID-19 cases among both patients and staff. All hospices had implemented policy changes, and several had rapidly implemented changes in practice including transfer of staff from inpatient to community settings, change in admission criteria, and daily telephone support for families. Concerns included scarcity of personal protective equipment, a lack of hospice-specific guidance on COVID-19, anxiety about needing to care for children and other relatives, and poor integration of palliative care in the acute setting. ConclusionThe hospice sector is capable of responding flexibly and rapidly to the COVID-19 pandemic. Governments must urgently recognise the essential contribution of hospice and palliative care to the COVID-19 pandemic, and ensure these services are integrated into the health care system response. Availability of personal protective equipment and setting-specific guidance is essential. What is already knownO_LIThe Coronavirus disease 2019 (COVID-19) has estimated global mortality of 3.4%, and numbers of cases are rapidly escalating worldwide. C_LIO_LIHospice services face unprecedented pressure, with resources rapidly stretched beyond normal bounds. C_LIO_LINo data exist on the response and role of hospice and palliative care teams to COVID-19. C_LIO_LIWithin Europe, Italy has been most affected by COVID-19. C_LI What this paper addsO_LIWe surveyed 16 Italian hospices in March 2020, all of which had implemented rapid policy changes in response to COVID-19. C_LIO_LIChanges to practice included moving to more support in community settings, change in admission criteria, and daily telephone support for families. C_LIO_LIPersonal protective equipment and guidance were lacking. C_LIO_LIAssessments of risk and potential impact on staff varied greatly. C_LI Implications for policy and practiceO_LIGovernments must recognise the hospice and palliative care sector as an essential component of the health care system response to COVID-19. C_LIO_LIThe hospice sector is capable of responding rapidly to the COVID-19 pandemic, but the potential of this response will be undermined unless hospices can access personal protective equipment. C_LIO_LIConsiderations for hospice services during the COVID-19 pandemic are changes to visitor policies, interruption of volunteering, shifting roles and responsibilities such as greater community working and telephone support for relatives. C_LI
ABSTRACT
BackgroundCOVID-19 has directly and indirectly caused high mortality worldwide. AimTo explore patterns of mortality during the COVID-19 pandemic and implications for palliative care provision, planning, and research. DesignDescriptive analysis and population-based modelling of routine data. Participants and settingAll deaths registered in England and Wales between 7th March and 15th May 2020. We described the following mortality categories by age, gender and place of death: 1) baseline deaths (deaths that would typically occur in a given period) 2) COVID-19 deaths 3) additional deaths not directly attributed to COVID-19. We estimated the proportion of COVID-19 deaths among people who would be in their last year of life in the absence of the pandemic, using simple modelling with explicit assumptions. ResultsDuring the first 10 weeks of the pandemic there were 101,615 baseline deaths, 41,105 COVID-19 deaths and 14,520 additional deaths. Deaths in care homes increased by 220% compared to home and hospital deaths which increased by 77% and 90%. Hospice deaths fell by 20%. Additional deaths were among older people (86% aged [≥]75 years), and most occurred in care homes (56%) and at home (43%). We estimate that 44% (38% to 50%) of COVID-19 deaths occurred among people who would have been in their last year of life in the absence of the pandemic. ConclusionsHealthcare systems must ensure availability of palliative care to support people with severe COVID-19 in community and hospital settings. Integrated models of palliative care in care homes are urgently needed. Key statementsO_ST_ABSWhat is already known about the topic?C_ST_ABSO_LIThe COVID-19 pandemic has directly and indirectly resulted in high mortality in many affected nations. C_LIO_LIInternationally the response has been focused on prevention and curative treatments, with little emphasis on palliative care needs of people dying during the COVID-19 pandemic. C_LIO_LIWe do not know how many of those dying with COVID-19 would have been in their last year of life in the absence of the pandemic, and this group may have distinct care needs. C_LI What this paper addsO_LIThe number of people dying in care homes trebled during the first 10 weeks of the COVID-19 pandemic in England and Wales; many of these deaths were additional deaths, that is associated with the COVID-19 pandemic but not directly as a result of COVID-19. C_LIO_LIWe estimate almost half of all COVID-19 deaths occurred among people who would have been in their last year of life in the absence of the pandemic. C_LI Implications for practice, theory or policyO_LIHealthcare systems must ensure availability of palliative care to support people with severe COVID-19 in community and hospital settings. C_LIO_LIThe need for integrated models of palliative care in care home settings is imperative and research to underpin these models is warranted. C_LI
ABSTRACT
BackgroundVolunteers are common within palliative care services, and provide support that enhances care quality. The support they provided, and any role changes, during the COVID-19 pandemic are unknown. AimsTo 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. MethodsMulti-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. Results458 respondents: 277 UK, 85 rest of Europe, and 95 rest of the world. 68.5% indicated volunteer use pre-COVID-19. These were across a number of roles (from 458): direct patient/family facing support (58.7%), indirect support (e.g. driving) (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, (OR=0.15, 95%CI = 0.07-0.3 p<.001). This reduction in volunteers was felt to protect potentially vulnerable volunteers and with policy changes preventing volunteers from supporting services. However, adapting was also seen where new roles were created, or existing roles pivoted to provide virtual support. Discussion and conclusionVolunteers were mostly prevented from supporting many forms of palliative care, particularly in in-patient hospices, 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.
ABSTRACT
BackgroundSystematic data on the care of people dying with COVID-19 are scarce. We studied the response of and challenges for palliative care services during the COVID-19 pandemic. MethodsWe surveyed palliative care and hospice services, contacted via relevant organisations. Multivariable logistic regression identified associations with key challenges. Content analysis explored free text. Findings458 services responded; 277 UK, 85 rest of Europe, 95 rest of the world (1 country unreported); 81% cared for patients with suspected or confirmed COVID-19, 77% had staff with suspected or confirmed COVID-19; 48% reported shortages of Personal Protective Equipment (PPE), 40% staff shortages, 24% medicines shortages, 14% shortages of other equipment. Services provided direct care and education in symptom management and communication; 91% changed how they worked. Care often shifted to increased community and hospital care, with fewer admissions to inpatient palliative care units. Factors associated with increased odds of PPE shortages were: charity rather than public management (OR 3{middle dot}07, 95% CI 1{middle dot}81-5{middle dot}20), inpatient palliative care unit rather than other setting (OR 2{middle dot}34, 95% CI 1{middle dot}46-3{middle dot}75). Being outside the UK was associated with lower odds of staff shortages (OR 0{middle dot}44, 95% CI 0{middle dot}26-0{middle dot}76). Staff described increased workload, concerns for their colleagues who were ill, whilst expending time struggling to get essential equipment and medicines, perceiving they were not a front-line service. InterpretationAcross all settings palliative care services were often overwhelmed, yet felt ignored in the COVID-19 response. Palliative care needs better integration with health care systems when planning and responding to future epidemics/pandemics. FundingMRC grant number MR/V012908/1, Cicely Saunders International and NIHR ARC South London. Research in contextO_ST_ABSEvidence before this studyC_ST_ABSSystematic data on the response of palliative care services during COVID-19 are lacking. A search of PubMed on 27 August 2020 (start date: 01 December 2019) using keywords (palliative care OR end of life care OR hospice) and (COVID-19 OR coronavirus) and (multinational OR international) identified no studies that reported multinational or international data; there were 79 articles, mostly opinion pieces, single centre case studies or reports. A search for systematic reviews about palliative care and hospice services during pandemics of PubMed, with the same time periods and the keywords (palliative care OR end of life care OR hospice) and (COVID-19 OR coronavirus OR SARS-CoV-2) and (systematic review OR meta-analysis), identified one systematic review by Etkind et al, which underpinned this research and shares two senior authors (Higginson, Sleeman). Of 3094 articles identified, 10 studies, all observational, considered the palliative care response in pandemics. Studies were from single units or countries: West Africa, Taiwan, Hong Kong, Singapore, the U.S. (a simulation), and Italy (the only one considering COVID-19). The review concluded hospice and palliative care services are essential in the response to COVID-19 but systematic data are urgently needed to inform how to improve care for those who are likely to die, and/or have severe symptoms. Added value of this studyWe found a high response by palliative care services during the COVID-19 pandemic. Services cared for a surge in patients dying from and with severe symptoms due to COVID-19 in three main categories: patients with underlying conditions and/or multimorbid disease not previously known to palliative care (70% of services), patients already known to palliative care services (47% of services), and patients, previously healthy, now dying from COVID-19 (37% of services). More than three quarters of services reported having staff with suspected or confirmed COVID-19. We found high levels of shortages of Personal Protective Equipment (PPE), staff, medicines and other equipment, with different effects according to service management, care settings and world regions. Mitigating these challenges was extremely time consuming, limiting the palliative care response. Implications of all the available evidenceDespite actively supporting dying patients, those with severe symptoms, their families/carers, and supporting other clinicians, palliative care professionals felt ignored by national health systems during the COVID-19 pandemic. Palliative care services need equipment, medicines and adequate staff to contribute fully to the pandemic response. Their crucial role must be better recognised and integrated, including into infection disease management, with improved workforce planning and management, so that patients and families can be better supported.
ABSTRACT
ObjectivesTo explore the experiences of, and impact on, staff working in palliative care during the COVID-19 pandemic. DesignQualitative 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. SettingOrganisations providing specialist palliative services in any setting. ParticipantsStaff working in specialist palliative care, purposefully sampled by the criteria of role, care setting and COVID-19 experience. Main outcome measuresExperiences of working in palliative care during the COVID-19 pandemic. ResultsFive 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. ConclusionsThis 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.
ABSTRACT
BackgroundPalliative 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. AimTo understand rehabilitation provision in palliative care services during the Covid-19 pandemic, identifying and reflecting on adaptative and innovative practice to inform ongoing provision. DesignCross-sectional national online survey. Setting/participantsRehabilitation leads for specialist palliative care services across hospice, hospital, or community settings, conducted from 30/07/20 to 21/09/2020. Findings61 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. ConclusionThis 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. Key StatementsO_ST_ABSWhat is already known about the topic?C_ST_ABSO_LIGuidelines recommend that rehabilitation targeting function, well-being, and social participation is provided by specialist palliative care services. C_LIO_LIPrior to Covid-19, there was variable provision of palliative rehabilitation in the UK. This variation was related to local service priorities, funding, and commissioning constraints. C_LI What this paper addsO_LIOver time, Covid-19 related disruptions forced services to reconfigure and adapt which caused fluctuations in the shared spaces in which health professionals, patients and family care givers met to participate in rehabilitation. C_LIO_LIThese fluctuations resulted in the adoption of digital and remote forms of care which altered health professionals and patients capacity to participate in, and the equity of access to and reach of, rehabilitation. C_LIO_LICovid-19 has acted as a springboard for learning, with many rehabilitation services hoping to move into the future by (re)gaining losses and integrating these with lessons learned during the pandemic. C_LI Implications for practice, theory or policyO_LIRecommendations are made to support extended reach and more equitable access to rehabilitation in palliative care services. C_LIO_LIWe recommend mixed methods evaluations of hybrid models of in-person and online rehabilitation across palliative care settings. C_LI