Charitably funded hospices and the challenges associated with the COVID-19 pandemic: a mixed-methods study (CovPall).

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.

Experiences of staff providing specialist palliative care during COVID-19: a multiple qualitative case study.

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.

Understanding the impact of the Covid-19 pandemic on delivery of rehabilitation in specialist palliative care services: An analysis of the CovPall-Rehab survey data.

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.

Prohibit, Protect, or Adapt? The Changing Role of Volunteers in Palliative and Hospice Care Services During the COVID-19 Pandemic. A Multinational Survey (Covpall).

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.

Changes in mortality patterns and place of death during the COVID-19 pandemic: A descriptive analysis of mortality data across four nations.

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.

'Necessity is the mother of invention': Specialist palliative care service innovation and practice change in response to COVID-19. Results from a multinational survey (CovPall).

BACKGROUND: Specialist palliative care services have a key role in a whole system response to COVID-19, a disease caused by the SARS-CoV-2 virus. There is a need to understand service response to share good practice and prepare for future care. AIM: To map and understand specialist palliative care services innovations and practice changes in response to COVID-19. DESIGN: Online survey of specialist palliative care providers (CovPall), disseminated via key stakeholders. Data collected on service characteristics, innovations and changes in response to COVID-19. Statistical analysis included frequencies, proportions and means, and free-text comments were analysed using a qualitative framework approach. SETTING/PARTICIPANTS: Inpatient palliative care units, home nursing services, hospital and home palliative care teams from any country. RESULTS: Four hundred and fifty-eight respondents: 277 UK, 85 Europe (except UK), 95 World (except UK and Europe), 1 missing country. 54.8% provided care across 2+ settings; 47.4% hospital palliative care teams, 57% in-patient palliative care units and 57% home palliative care teams. The crisis context meant services implemented rapid changes. Changes involved streamlining, extending and increasing outreach of services, using technology to facilitate communication, and implementing staff wellbeing innovations. Barriers included; fear and anxiety, duplication of effort, information overload and funding. Enablers included; collaborative teamwork, staff flexibility, a pre-existing IT infrastructure and strong leadership. CONCLUSIONS: Specialist palliative care services have been flexible, highly adaptive and have adopted low-cost solutions, also called 'frugal innovations', in response to COVID-19. In addition to financial support, greater collaboration is essential to minimise duplication of effort and optimise resource use.ISRCTN16561225 https://doi.org/10.1186/ISRCTN16561225.