The role and response of primary care and community nursing in the delivery of palliative care in epidemics and pandemics: a rapid review to inform practice and service delivery during the COVID-19 pandemic
June 4, 2020
Sarah Mitchell1,2, Victoria Maynard2, Victoria Lyons2, Nicholas Jones3, Clare Gardiner4
On behalf of the Oxford COVID-19 Evidence Service Team
Centre for Evidence-Based Medicine, Nuffield Department of Primary Care Health Sciences
University of Oxford
Correspondence to email@example.com
- Community services play an important role in the provision of palliative care during pandemics, such as COVID-19.
- This review reveals a stark and concerning lack of evidence from previous pandemics around how primary care and community nursing services can best adapt palliative care provision within a pandemic.
- Important factors in a successful response include consistent and timely communication between policy makers and healthcare providers, workforce training and flexibility, and continued delivery of equipment and access to necessary support services, such as diagnostic tests.
The provision of palliative care to patients, families and communities is core to the role and identity of primary care physicians (1, 2). General practitioners (GPs) or family physicians (FPs), and community nurses, have the potential and skills to deliver palliative and end-of-life care integrated into every encounter in the community when their working environment allows this, and with the support of specialist colleagues (3). Prior to the COVID-19 pandemic, barriers to effective palliative and end of life care in the community by GPs included a lack of time with patients and families, inadequate support services in the community, insufficient education and training and inconsistent access to specialist palliative care services (4, 5).
The COVID-19 pandemic has been associated with an increased number of deaths in a range of community settings including care homes (6). There has been uncertainty over disease progression and challenging new symptom profiles (7) and significant changes in the way consultations are conducted, with the need for personal protective equipment (PPE) for all face-to-face appointments and increased use of videoconferences (8). This has implications for general practice and community nursing teams in their delivery of palliative care, alongside providers of specialist palliative care.
A rapid review of the role and response of hospices and specialist palliative care services conducted early in the COVID-19 pandemic highlights the need for such services to respond rapidly and flexibly during pandemics characterised by rapid transmission, with a need to shift resources into the community (9). However, a whole system approach to the increased need for palliative care during COVID-19 is needed, and the role and response of general practice and community nursing services must be considered alongside that of specialist palliative care services. The aim of this review is therefore to address the research question:
What is the role and response of primary care and community nursing services in the delivery of palliative care in epidemics and pandemics?
The Centre for Reviews and Dissemination (CRD) guidance for systematic reviews in healthcare, and the Cochrane Collaboration’s handbook for systematic reviews of interventions informed the method for this rapid review (11, 12). The structure and content is informed by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) Guidelines (13). A protocol has been registered and published on the PROSPERO database (ref no: CRD42020186010).
Searches were conducted with the input of a specialist librarian at the University of Sheffield in Medline, Embase, PsychINFO, CINAHL and Web of Science. The search strategy included the following search terms and is detailed in Appendix 1.
- Terms for palliative care, end of life care, primary care and family practice, community nursing, district nursing
- Terms for pandemics and epidemics including specific named pandemics
Forward and backward citation searching and a “desk-drawer” search were also conducted to identify further relevant articles.
A narrative synthesis was undertaken given the between study heterogeneity (14). Cross-cutting themes were identified using Downar and Seccareccia’s model for a palliative pandemic plan including ‘systems’, ‘space’, ‘staff’ and ‘stuff’ as a framework (15). The narrative was reviewed at intervals by a palliative care rapid review team based at the University of Oxford, and the University of Sheffield Palliative Care Studies Advisory Group for patient and public involvement.
522 articles were identified (search date 7th May 2020), with six additional papers identified through the desk-drawer search and screening of reference lists of relevant articles and reports. Following removal of duplicates, 367 articles remained for title and abstract screening. 21 articles underwent full text review. Studies that provided any relevant research findings concerning the delivery of palliative care in the community during pandemics by GPs, community nurses and community teams including paid healthcare workers were included.
After applying the inclusion and exclusion criteria, five articles remained, one of which was only available as a conference abstract. There were no randomized-controlled trials or systematic reviews. The overall quality of the evidence was acceptable and in keeping with the methodological principles of the selected design. Together they represented a very small, heterogeneous body of evidence.
Of the five included studies, one was from Canada (16), one from the UK (20), one from the USA (18) and the others written by collaboratively between teams in the UK and South Africa (17) and the USA and South Africa (19). There was one qualitative interview study of patients with uncured tuberculosis (TB) (17), one survey of GPs (16), one evaluation of a community acute care centre (18), one qualitative interview study of community support workers and evaluation of an educational programme (19), and the other reported epidemiological data (20). One study captured patient perspectives (17), two studies related to general practice (16, 20), and two related to care provided by community nursing and paid community healthcare workers (18, 19).
EMERGING EVIDENCE IN COVID-19
The most striking finding of the review was the lack of published literature related to the role and response of general practice and community nursing services in the delivery of palliative care during pandemics. Five articles were identified (16-20), one of which was only available in abstract form (20). No articles were published directly related to COVID-19. Table 1 presents the key evidence and recommendations for practice from the included studies.
Table 1: Synthesis of evidence and recommendations for the response of primary care to palliative care delivery during a pandemic
|Element of the response model
||Findings of the review
- Need for consistent and timely communications re. protocols and public health measures to primary care during pandemics (16)
- Recognised lack of attention to palliative care in modelling the general practice response to pandemics (18).
- Low proportion of GPs feel confident in levels of government (national / local) working effectively together (16).
||Provision of care at home
- Previous pandemics have shown excess numbers of deaths (20)
- Clearly recognised need for more palliative care in the community (17) including when patients are transitioned home for end of life care (18).
- Need for psychosocial support clearly outlined (17)
- Need for emotional and financial support for family carers including debriefing (19) and relief of responsibility by professional services (17).
||General practice workforce
- Shortage of GPs impacts on the ability to prepare for infectious disease outbreak (16).
- GPs personally were prepared to provide extra capacity (16).
Training and skills development
- Palliative care identified as a priority for training during pandemics for community health workers (19)
- Importance of ‘debriefing’ defined as a time to talk about the impact of caring for sick people on the emotional wellbeing of healthcare workers (19)
- Recognised importance of self-care, impact of multiple losses, moral distress over ethical issues and work within limited resources (19)
||The impact of other aspects of care delivery during pandemics were highlighted but not specifically in relation to palliative care. These included PPE, distancing, cleaning consulting areas, and adequate access to equipment and diagnostic tests including blood tests and x-rays (16)
Pandemics are associated with an increased number of deaths in the community that impacts on community services including general practice (20). There was evidence that GPs felt they were disadvantaged by a lack of consistent and timely communication about policy and processes, such as screening protocols, treatment protocols, public health measure summaries and information from local hospitals, although this was not specifically in relation to palliative care (16). A low number of GP respondents felt confident that all levels of government would work together to provide the information that they needed (16). There was a perceived lack of attention to palliative care in pandemic planning and service modelling in general practice and community services despite the need for ‘mass palliative care protocols’ being raised during past pandemic influenza outbreaks (18).
The need for more palliative care in the community during pandemics was outlined, particularly psychosocial care for patients who were at risk of feeling isolated, and care for family carers (17). In the only relevant patient study identified, patients with TB stated that they chose to receive care at home for reasons including the trauma of seeing others die of the same disease in hospital, and the associated removal of hope (17). However, they also perceived a risk of discrimination from community services due to their infective status (17). Community nursing services have an important role in transitioning patients back home from acute hospitals and care centres to receive palliative and end of life care (18).
One study described the importance of debrief for family members who were ‘chosen by healthcare services to be responsible’ for aspects of patient care. There was a need for services to provide relief of some of that responsibility, and for psychological and financial support for family members (17).
Concerns were raised about a shortage of GPs having a negative impact on their ability to prepare for the impact of a pandemic on their practice, which included, but was not limited to palliative care, house-calls and nursing home care (16). Other aspects that had an impact on practice included PPE, distancing, cleaning consulting areas, access to equipment and diagnostic tests including blood tests and x-rays (16). Individual GPs expressed a willingness to work longer hours and personally provide extra capacity (16).
Palliative care was identified as a specific training need for community health workers during a pandemic, with effective strategies for education including role plays and narratives, training the trainer, online resources and an ongoing educational programme (19). The importance of ‘debriefing’ was highlighted, defined as a time to talk about the impact of caring for very sick people, multiple losses, moral distress over ethical issues and work within limited resources on staff wellbeing (19). Training and debrief for family members is also required to enable them to play a leading role in the provision of care (19).
The focus of pandemic plans and frameworks in general practice has been on surge in demand and sustaining urgent and essential services, public health responsibilities including infection control and immunisation, ensuring clinical facilities and equipment are adequate, and business continuity, rather than any specific focus on palliative care (21).
The increased need for palliative care in the community, and the role of general practice and community nursing teams, have been brought into sharp focus during the COVID-19 pandemic. The role and response of hospice and specialist palliative care teams in the community depends at least in part on the response of generalist colleagues, including continuity of care, levels of expertise and capacity to deliver this important aspect of care. Given the lack of research evidence during previous pandemics, there is an urgent need for research to capture learning and experience during the COVID-19 pandemic to inform service design and development, including training, as this pandemic progresses through it’s next phases, and for future pandemics.
- The review reveals a stark and concerning lack of evidence from previous pandemics around the role of these community providers in palliative care provision, despite recognition of the need for more palliative care in the community during pandemics.
- This lack of evidence is not in keeping with the current clinical demands on general practice and community teams in the provision of palliative and end of life care to patients in the community, including in care homes, during the COVID-19 pandemic.
- This provides a compelling case for research to capture learning, experiences and effective innovations and service developments that are happening now.
Perspective from low and middle income countries
In low and middle income countries (LMIC), people frequently lack access to high quality community healthcare including palliative care (23). Access to affordable quality care is only achievable through developing and resourcing effective primary care services which are often provided by mid-level community health workers (24). WHO has identified that palliative care is an essential aspect of primary care led universal health coverage as the number of people suffering from advanced chronic disease in LMIC increases (25). Holistic palliative care can be effectively delivered in LMIC countries by community workers and volunteers (26). In Africa this has been facilitated by developing palliative care in response to the HIV pandemic (26) but people with chronic non-communicable diseases may lack access to it (27). During the Covid-19 pandemic the need for community based palliative care will increase as people with chronic illnesses and those suffering from Covid-19, particularly the elderly, may be unable to travel to hospitals for care. Resources for development of community palliative care in LMIC are available (28) as are resources for palliative care in LMIC during Covid-19 (29).
Disclaimer: the article has not been peer-reviewed; it should not replace individual clinical judgement and the sources cited should be checked. The views expressed in this commentary represent the views of the authors and not necessarily those of the host institution, the NHS, the NIHR, or the Department of Health and Social Care. The views are not a substitute for professional medical advice.
Dr Sarah Mitchell PhD is a GP and Yorkshire Cancer Research Senior Research Fellow in the Department of Oncology and Metabolism, The University of Sheffield.
Dr Victoria Maynard is a Foundation Year 2 doctor in general practice.
Dr Victoria Lyons is a GP.
Dr Nick Jones is a GP and Wellcome Trust Doctoral Research Fellow at the Nuffield Department of Primary Care Health Sciences, The University of Oxford.
Dr Clare Gardiner PhD is a Senior Research Fellow at the Palliative and End of Life Care Studies Group, in the Health Sciences School, The University of Sheffield.
Database: Ovid MEDLINE(R) and Epub Ahead of Print, In-Process & Other Non-Indexed Citations and Daily <1946 to May 06, 2020>
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3 1 and 2 (5656)
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5 3 and 4 (127)
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