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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.
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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.
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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.