Introduction
The worldwide burden of serious health-related suffering, defined as suffering associated with life-limiting illness or injury, is predicted to escalate to almost 90% in the next 40 years (Sleeman et al. Reference Sleeman, De Brito and Etkind2019). Palliative care is both a school of thought and a clinical service that seeks to relieve the suffering of life-limiting illnesses for patients (children and adults) and their families (Quill and Abernethy Reference Quill and Abernethy2013; World Health Organization 2018). Health-care services are under increasing economic pressure within the context of an aging population and associated multi-morbidity and chronic illness, as well as improvements in medical care (Anderson Reference Anderson2011). At the same time, there has been a shift toward “ageing in place” and home-based care (Wiles Reference Wiles, Andrews and Phillips2004, p.96). This shift is accompanied by many Organisation for Economic Cooperation and Development countries, with an agenda to reduce the length of hospital stays and minimize the use of hospital beds by transferring care to the home (Williams and Botti Reference Williams and Botti2002). Delivery of palliative care in the community is thus a priority setting.
Community palliative care can be defined as palliative care provided within the patient’s home, the home of a relative, or a care home, or in a non-hospital setting while still residing at home (Walshe et al. Reference Walshe, Chew-Graham and Todd2008). A community palliative care team may be composed of specialist palliative care nurses who visit patients and families in their own homes or as part of a broader team delivering care to patients in facilities such as aged care facilities, hospices, or hospitals. Community palliative care thus can include both generalist and specialist palliative care services. Generalist palliative care is provided to patients and families with low to moderate levels of care complexity as a part of routine practice (Gardiner et al. Reference Gardiner, Gott and Ingleton2012). Generalist palliative care is a component of routine care and clinical practice by any health-care professional who is not a specialist palliative care team member. Specialist palliative care is provided to patients and families with moderate to highly complex care needs (e.g., complicated pain management or psychosocial needs) (MJHS 2022). Specialist palliative care is provided by health and allied health professionals with additional expertise and training (e.g., palliative care consultant and palliative care nurse specialist) (Department of Health (UK) 2008). The community palliative care team services include support and advice on pain and other distressing symptoms, psychosocial support for the patient and their families, and bereavement support (National Institute for Health (UK) 2017).
This growing demand for palliative care has been accelerated due to the COVID-19 pandemic (Kamal et al. Reference Kamal, Casarett and Meier2020). However, providing community-based palliative care is also more difficult to do safely and faces several challenges. Many patients who need palliative care at home are at increased risk from COVID-19, protective equipment is often in short supply, and surging deaths could overwhelm usual service provision (Lancet Reference Lancet2020). In response to COVID-19, community palliative care services must adapt rapidly and creatively to find new ways of working, revising, and establishing new policies (Downar et al. Reference Downar, Goldman and Pinto2017). As a result of COVID-19, we have witnessed the extraordinary adaptive capacity of health-care services to respond to unprecedented challenges, and hospice/palliative care is no exception (Dunleavy et al. Reference Dunleavy, Preston and Bajwah2021). There is a critical need to harness the lessons learned and evaluate practice changes and innovations. This is imperative if we are to provide safe and high-quality palliative care and optimize services, including making the best use of the limited specialist palliative care workforce available for those who need it most.
Aim
This integrative review sought to identify, describe, and synthesize previous studies on the challenges for health professionals delivering palliative care in the community during the COVID-19 pandemic.
Method
Design
Due to the diversity of research on the topic, an integrative review design was selected. An integrative review allows for the inclusion of diverse methodologies (e.g., experimental and nonexperimental research). It establishes what is known, what is unknown, and what remains uncertain concerning a topic, allowing for the development of a systematic knowledge base (Whittemore and Knafl Reference Whittemore and Knafl2005). This review complies with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines for reporting systematic reviews (Page et al. Reference Page, McKenzie and Bossuyt2021).
Search terms
The search terms included hospice OR palliative care OR end-of-life care OR terminal care OR terminally ill AND community OR community health nursing OR home nursing OR home care services OR home visiting services OR family physicians OR general practitioners OR family doctors AND Covid-19 OR coronavirus OR 2019-ncov OR sars-cov-2 OR cov-19 OR pandemic OR 2019 novel coronavirus OR coronavirus disease.
Inclusion criteria
Criteria for the inclusion of studies were empirical research that identified challenges to delivering palliative care in the community by professional care providers during COVID-19 restrictions. Further details included
• Language: English
• Topic: end-of-life care, palliative care, and terminal care
• Sample: health-care professionals (nurses, physicians, and home care service providers)
• Location: community care, outpatient care, and home care (including care homes)
• Time: COVID-19 (2019–2022)
• Design: descriptive, experimental, correlational, diagnostic, and explanatory
• Evaluation: experiences, descriptions, and perceptions
• Research paradigm: qualitative, quantitative, and mixed methods
Exclusion criteria
• Nonempirical articles
• Review articles
• Guidelines
• COVID-19 epidemiological studies, drug trials, or focus on patient symptoms or outcomes
• Non-palliative patients (including patients with COVID-19)
• Non-health professionals (including volunteers and family)
• Hospice inpatient services and hospital services
• Focused exclusively on the development of technological innovations during COVID-19 (including apps and telehealth)
• Unpublished manuscripts, theses, government documents, conference abstracts, and posters
• Non-English language papers
Search strategy
The search strategy consisted of searching electronic databases, hand searches of pertinent journals, and reference lists of relevant studies. Databases searched included: Ovid MEDLINE (2019–2022), CINAHL (2019–2022), PsycINFO (2019–2022), Social Care Online (2019–2022), PubMed (2019–2022), Embase (2019–2022), and Expanded Academic (2019–2022). The start date was December 2019 when COVID-19 was first identified (Yang and Wang Reference Yang and Wang2020). All searches combined all search terms (incl. truncations) for the 3 concepts of interest: palliative care, community care, and COVID-19. Each search varied to a degree to utilize the relevant MeSH/Thesaurus/Keyword headings specific to each database (Table 1).
Search strategy
The bibliographies of included review articles were also examined for additional citations omitted from the databases. The tables of contents of journals typically reporting palliative care and community health studies were searched by hand (Palliative Medicine, Journal of Pain and Symptom Management, and Health & Social Care in the Community). Table 1 provides a listing of articles retrieved by each database.
Data extraction
Four steps, as described by Whittemore and Knafl (Reference Whittemore and Knafl2005), (1) data reduction, (2) data display, (3) data comparison, and (4) conclusion drawing, were utilized. The papers were reviewed, and data were extracted from the title, abstract, and full text. One researcher (R.F.) completed all searches and removed duplicate records. Articles were first screened in EndNote (Hupe Reference Hupe2019) using the inclusion and exclusion criteria at the level of titles and abstracts by R.F. Full texts were screened by R.F. and D.B. Where there was uncertainty concerning inclusion, a decision was made by consensus.
Appraisal
It was expected that the included studies would have a variety of designs and methodologies. Specifically, the inclusion of both qualitative and quantitative research makes the process of quality appraisal challenging and may prove of little utility. In addition, the relatively limited research base, as well as complex methodological and ethical issues characteristic of palliative care, makes the topic unsuitable for traditional methods of review and synthesis (Gardiner et al. Reference Gardiner, Ingleton and Gott2011). For these reasons, the quality of the articles was not appraised in this review.
Analysis
A descriptive thematic analysis of the final articles was conducted to systematically review and synthesize research from different paradigms (Braun and Clarke Reference Braun and Clarke2006). The thematic analysis allows for identifying important themes and provides organized and structured methods of treating the literature (Braun and Clarke Reference Braun and Clarke2006). The content of each article was analyzed, and an initial list of themes was developed. The full-text papers were reread by R.F. and D.B., and the data were applied to each theme. The themes were then re-evaluated, relationships explored, and themes amalgamated.
Results
Database searches identified 1173 articles. Hand searches of relevant journals resulted in the further additions of Palliative Medicine (27), Journal of Pain and Symptom Management (27), and Health & Social Care in the Community (3), and a review of included article references added 1 additional article totaling 1231 articles. Once duplicates were removed, 733 articles remained. Six hundred and thirty-two articles were eliminated at the title and abstract stage. One hundred and one articles were reviewed in full by D.B. and R.F. using the inclusion and exclusion criteria. Utilization of the inclusion and exclusion criteria resulted in 27 articles for the final review. Figure 1 outlines the selection, inclusion, and exclusion processes (Figure 1).
PRISMA 2020 flow diagram for new systematic reviews which included searches of databases and registers only.
Article overview
The research was most frequently located in the United States (Bayly et al. Reference Bayly, Bradshaw and Fettes2022; Chua et al. Reference Chua, Olmsted and Plotke2022; Dhavale et al. Reference Dhavale, Koparkar and Fernandes2020; Hasson et al. Reference Hasson, Slater and Fee2022; Mitchell et al. Reference Mitchell, Harrison and Oliver2022, Reference Mitchell, Oliver and Gardiner2021; Page et al. Reference Page, Naik and Singh2020; Sleeman et al. Reference Sleeman, Cripps and Murtagh2022; Sumitha et al. Reference Sumitha, Thelly and Medona2022) of the included articles, followed by the United Kingdom (20–24). The remainder were conducted in India (Dhavale et al. Reference Dhavale, Koparkar and Fernandes2020; Page et al. Reference Page, Naik and Singh2020; Sumitha et al. Reference Sumitha, Thelly and Medona2022), Italy (Costantini et al. Reference Costantini, Sleeman and Peruselli2020; Franchini et al. Reference Franchini, Varani and Ostan2021; Varani et al. Reference Varani, Ostan and Franchini2021), Germany (Jansky et al. Reference Jansky, Schade and Rieder2021; Tielker et al. Reference Tielker, Weber and Simon2021), Australia (Luckett et al. Reference Luckett, Donkor and Phillips2021), Canada (Wentlandt et al. Reference Wentlandt, Cook and Morgan2021), New Zealand (Frey and Balmer Reference Frey and Balmer2022), Taiwan (Chou et al. Reference Chou, Yen and Feng2020), and one multinational study (Dunleavy et al. Reference Dunleavy, Preston and Bajwah2021). All of the articles were published between 2020 and 2022. The majority of studies utilized survey designs with samples of less than 1000 participants (Bayly et al. Reference Bayly, Bradshaw and Fettes2022; Costantini et al. Reference Costantini, Sleeman and Peruselli2020; Dunleavy et al. Reference Dunleavy, Preston and Bajwah2021; Hasson et al. Reference Hasson, Slater and Fee2022; Jones et al. Reference Jones, Lin and Durga2022; Kates et al. Reference Kates, Gerolamo and Pogorzelska-Maziarz2021; Luckett et al. Reference Luckett, Donkor and Phillips2021; Mitchell et al. Reference Mitchell, Harrison and Oliver2022, Reference Mitchell, Oliver and Gardiner2021; Ritchie et al. Reference Ritchie, Gallopyn and Sheehan2021; Rogers et al. Reference Rogers, Constantine and Thompson2021; Sleeman et al. Reference Sleeman, Cripps and Murtagh2022; Tielker et al. Reference Tielker, Weber and Simon2021; Varani et al. Reference Varani, Ostan and Franchini2021). Five studies reported qualitative designs using interviews or a focus group (Franchini et al. Reference Franchini, Varani and Ostan2021; Frey and Balmer Reference Frey and Balmer2022; Jansky et al. Reference Jansky, Schade and Rieder2021; Lalani et al. Reference Lalani, Cai and Wang2022; Sterling et al. Reference Sterling, Tseng and Poon2020). A few were short reports, case studies, or clinical notes (Dhavale et al. Reference Dhavale, Koparkar and Fernandes2020; Page et al. Reference Page, Naik and Singh2020; Silva and Schack Reference Silva and Schack2021; Sumitha et al. Reference Sumitha, Thelly and Medona2022; Weisse and Melekis Reference Weisse and Melekis2021; Wentlandt et al. Reference Wentlandt, Cook and Morgan2021). One included study utilized a cohort design (Chou et al. Reference Chou, Yen and Feng2020). While some of the articles exclusively focused on palliative care delivery in the community (Franchini et al. Reference Franchini, Varani and Ostan2021; Frey and Balmer Reference Frey and Balmer2022; Page et al. Reference Page, Naik and Singh2020; Silva and Schack Reference Silva and Schack2021; Sterling et al. Reference Sterling, Tseng and Poon2020; Sumitha et al. Reference Sumitha, Thelly and Medona2022; Varani et al. Reference Varani, Ostan and Franchini2021; Weisse and Melekis Reference Weisse and Melekis2021) or primary care settings (Mitchell et al. Reference Mitchell, Harrison and Oliver2022, Reference Mitchell, Oliver and Gardiner2021; Ritchie et al. Reference Ritchie, Gallopyn and Sheehan2021; Tielker et al. Reference Tielker, Weber and Simon2021), the majority included palliative care delivery in other settings as well (Bayly et al. Reference Bayly, Bradshaw and Fettes2022; Chou et al. Reference Chou, Yen and Feng2020; Chua et al. Reference Chua, Olmsted and Plotke2022; Costantini et al. Reference Costantini, Sleeman and Peruselli2020; Dunleavy et al. Reference Dunleavy, Preston and Bajwah2021; Hasson et al. Reference Hasson, Slater and Fee2022; Jansky et al. Reference Jansky, Schade and Rieder2021; Jones et al. Reference Jones, Lin and Durga2022; Kates et al. Reference Kates, Gerolamo and Pogorzelska-Maziarz2021; Lalani et al. Reference Lalani, Cai and Wang2022; Luckett et al. Reference Luckett, Donkor and Phillips2021; Rogers et al. Reference Rogers, Constantine and Thompson2021; Sleeman et al. Reference Sleeman, Cripps and Murtagh2022; Wentlandt et al. Reference Wentlandt, Cook and Morgan2021). Articles reported palliative care delivery in the community from specialist palliative care services (Bayly et al. Reference Bayly, Bradshaw and Fettes2022; Chou et al. Reference Chou, Yen and Feng2020; Costantini et al. Reference Costantini, Sleeman and Peruselli2020; Dunleavy et al. Reference Dunleavy, Preston and Bajwah2021; Franchini et al. Reference Franchini, Varani and Ostan2021; Frey and Balmer Reference Frey and Balmer2022; Hasson et al. Reference Hasson, Slater and Fee2022; Jones et al. Reference Jones, Lin and Durga2022; Page et al. Reference Page, Naik and Singh2020; Rogers et al. Reference Rogers, Constantine and Thompson2021; Silva and Schack Reference Silva and Schack2021; Sleeman et al. Reference Sleeman, Cripps and Murtagh2022; Sumitha et al. Reference Sumitha, Thelly and Medona2022; Varani et al. Reference Varani, Ostan and Franchini2021), specialist teams from multiple settings (Jansky et al. Reference Jansky, Schade and Rieder2021; Kates et al. Reference Kates, Gerolamo and Pogorzelska-Maziarz2021; Lalani et al. Reference Lalani, Cai and Wang2022; Wentlandt et al. Reference Wentlandt, Cook and Morgan2021) from the perspective of general practitioner (GP) practices (Mitchell et al. Reference Mitchell, Harrison and Oliver2022, Reference Mitchell, Oliver and Gardiner2021; Ritchie et al. Reference Ritchie, Gallopyn and Sheehan2021; Tielker et al. Reference Tielker, Weber and Simon2021), allied health professionals across settings (Dhavale et al. Reference Dhavale, Koparkar and Fernandes2020; Sterling et al. Reference Sterling, Tseng and Poon2020), and comfort care homes (Weisse and Melekis Reference Weisse and Melekis2021). Table 2 presents a summary of the 27 included articles.
An integrative review included articles (n = 27)
Abbreviations: PC, Palliative Care; IDT, Interdisciplinary Team; HHA, Home Health Aides; HBPC, Home-Based Palliative Care; NYC, New York City; PCP, Palliative Care Professionals; GHQ, General Health Questionnaire.
Thematic analysis
The themes in the research findings centered on 6 interconnected categories: (1) resources, (2) communication, (3) education and training, (4) interdisciplinary coordination, (5) physical and emotional well-being of health professionals, and (6) quality of care. Figure 2 gives an overview of the themes and shows their relationships to each other.
Thematic analysis.
Resources
Issues surrounding the scarcity of resources (including the provision of personal protective equipment (PPE), medications, and technology), as well as staff shortages and funding issues, were highlighted by several articles.
The necessity of additional precautions against COVID-19 led to the adoption of PPE for community and out-of-hours care. This increased demand led to challenges to the provision of PPE. Fourteen articles reported both inadequate supplies, including PPE supplies and medicines (Bayly et al. Reference Bayly, Bradshaw and Fettes2022; Costantini et al. Reference Costantini, Sleeman and Peruselli2020; Dhavale et al. Reference Dhavale, Koparkar and Fernandes2020; Franchini et al. Reference Franchini, Varani and Ostan2021; Hasson et al. Reference Hasson, Slater and Fee2022; Jansky et al. Reference Jansky, Schade and Rieder2021; Jones et al. Reference Jones, Lin and Durga2022; Luckett et al. Reference Luckett, Donkor and Phillips2021; Page et al. Reference Page, Naik and Singh2020; Ritchie et al. Reference Ritchie, Gallopyn and Sheehan2021; Rogers et al. Reference Rogers, Constantine and Thompson2021; Sterling et al. Reference Sterling, Tseng and Poon2020; Weisse and Melekis Reference Weisse and Melekis2021; Wentlandt et al. Reference Wentlandt, Cook and Morgan2021). Staff number reductions due to furloughs and redistribution and staff self-isolating (Bayly et al. Reference Bayly, Bradshaw and Fettes2022; Frey and Balmer Reference Frey and Balmer2022; Hasson et al. Reference Hasson, Slater and Fee2022; Jansky et al. Reference Jansky, Schade and Rieder2021; Jones et al. Reference Jones, Lin and Durga2022; Kates et al. Reference Kates, Gerolamo and Pogorzelska-Maziarz2021; Lalani et al. Reference Lalani, Cai and Wang2022; Luckett et al. Reference Luckett, Donkor and Phillips2021; Mitchell et al. Reference Mitchell, Oliver and Gardiner2021; Ritchie et al. Reference Ritchie, Gallopyn and Sheehan2021; Rogers et al. Reference Rogers, Constantine and Thompson2021; Sleeman et al. Reference Sleeman, Cripps and Murtagh2022) as well as a decrease in service provision from volunteers and the allied health workforce (Costantini et al. Reference Costantini, Sleeman and Peruselli2020; Frey and Balmer Reference Frey and Balmer2022; Jansky et al. Reference Jansky, Schade and Rieder2021; Jones et al. Reference Jones, Lin and Durga2022; Luckett et al. Reference Luckett, Donkor and Phillips2021; Mitchell et al. Reference Mitchell, Oliver and Gardiner2021; Ritchie et al. Reference Ritchie, Gallopyn and Sheehan2021; Weisse and Melekis Reference Weisse and Melekis2021) resulted in increased staff workload (Bayly et al. Reference Bayly, Bradshaw and Fettes2022; Frey and Balmer Reference Frey and Balmer2022; Hasson et al. Reference Hasson, Slater and Fee2022; Jansky et al. Reference Jansky, Schade and Rieder2021; Jones et al. Reference Jones, Lin and Durga2022; Kates et al. Reference Kates, Gerolamo and Pogorzelska-Maziarz2021; Lalani et al. Reference Lalani, Cai and Wang2022; Luckett et al. Reference Luckett, Donkor and Phillips2021; Mitchell et al. Reference Mitchell, Oliver and Gardiner2021; Wentlandt et al. Reference Wentlandt, Cook and Morgan2021) Financial issues compounded these challenges for some specialist palliative care services (Dunleavy et al. Reference Dunleavy, Preston and Bajwah2021; Jansky et al. Reference Jansky, Schade and Rieder2021; Ritchie et al. Reference Ritchie, Gallopyn and Sheehan2021; Silva and Schack Reference Silva and Schack2021; Sterling et al. Reference Sterling, Tseng and Poon2020), particularly for those run on a private or charitable funding model that was unable to conduct fundraising activities (Hasson et al. Reference Hasson, Slater and Fee2022; Ritchie et al. Reference Ritchie, Gallopyn and Sheehan2021; Sleeman et al. Reference Sleeman, Cripps and Murtagh2022; Weisse and Melekis Reference Weisse and Melekis2021).
Communication
Communication challenges focused on both messaging and means of communication. Both health professionals and patients faced communication challenges during the pandemic. Due to the rapidly evolving situation during the pandemic, messaging for health professionals from national and local governmental authorities sometimes led to confusion due to information overload, mixed messaging, or lack of information (Dunleavy et al. Reference Dunleavy, Preston and Bajwah2021; Frey and Balmer Reference Frey and Balmer2022; Jansky et al. Reference Jansky, Schade and Rieder2021; Luckett et al. Reference Luckett, Donkor and Phillips2021; Rogers et al. Reference Rogers, Constantine and Thompson2021; Sterling et al. Reference Sterling, Tseng and Poon2020). Internal messaging in specialist organizations (e.g., reduction in team meetings) also led to limited communication among health professional teams (Bayly et al. Reference Bayly, Bradshaw and Fettes2022; Franchini et al. Reference Franchini, Varani and Ostan2021; Frey and Balmer Reference Frey and Balmer2022; Jansky et al. Reference Jansky, Schade and Rieder2021; Jones et al. Reference Jones, Lin and Durga2022; Rogers et al. Reference Rogers, Constantine and Thompson2021). A shift to telephone and virtual technology for the delivery of care to reduce the possibility of infection was reported by most studies (Bayly et al. Reference Bayly, Bradshaw and Fettes2022; Costantini et al. Reference Costantini, Sleeman and Peruselli2020; Dhavale et al. Reference Dhavale, Koparkar and Fernandes2020; Dunleavy et al. Reference Dunleavy, Preston and Bajwah2021; Franchini et al. Reference Franchini, Varani and Ostan2021; Frey and Balmer Reference Frey and Balmer2022; Hasson et al. Reference Hasson, Slater and Fee2022; Jansky et al. Reference Jansky, Schade and Rieder2021; Jones et al. Reference Jones, Lin and Durga2022; Kates et al. Reference Kates, Gerolamo and Pogorzelska-Maziarz2021; Lalani et al. Reference Lalani, Cai and Wang2022; Luckett et al. Reference Luckett, Donkor and Phillips2021; Mitchell et al. Reference Mitchell, Harrison and Oliver2022; Page et al. Reference Page, Naik and Singh2020; Ritchie et al. Reference Ritchie, Gallopyn and Sheehan2021; Rogers et al. Reference Rogers, Constantine and Thompson2021; Silva and Schack Reference Silva and Schack2021; Sumitha et al. Reference Sumitha, Thelly and Medona2022; Tielker et al. Reference Tielker, Weber and Simon2021; Wentlandt et al. Reference Wentlandt, Cook and Morgan2021). However, digital technology used to provide care to patients led to challenges in terms of both technical problems and the availability of equipment (Chua et al. Reference Chua, Olmsted and Plotke2022; Dunleavy et al. Reference Dunleavy, Preston and Bajwah2021; Lalani et al. Reference Lalani, Cai and Wang2022; Luckett et al. Reference Luckett, Donkor and Phillips2021), as well as equity issues related to patient and family access (the digital divide), including digital literacy and connectivity issues (Bayly et al. Reference Bayly, Bradshaw and Fettes2022; Chua et al. Reference Chua, Olmsted and Plotke2022; Lalani et al. Reference Lalani, Cai and Wang2022; Luckett et al. Reference Luckett, Donkor and Phillips2021; Page et al. Reference Page, Naik and Singh2020; Ritchie et al. Reference Ritchie, Gallopyn and Sheehan2021; Silva and Schack Reference Silva and Schack2021; Tielker et al. Reference Tielker, Weber and Simon2021).
Education and training
For health professionals, access to upskilling related to end-of-life care delivery during the pandemic (including infection control) (Bayly et al. Reference Bayly, Bradshaw and Fettes2022; Costantini et al. Reference Costantini, Sleeman and Peruselli2020; Dhavale et al. Reference Dhavale, Koparkar and Fernandes2020; Dunleavy et al. Reference Dunleavy, Preston and Bajwah2021; Franchini et al. Reference Franchini, Varani and Ostan2021; Hasson et al. Reference Hasson, Slater and Fee2022; Jones et al. Reference Jones, Lin and Durga2022; Luckett et al. Reference Luckett, Donkor and Phillips2021; Mitchell et al. Reference Mitchell, Harrison and Oliver2022; Page et al. Reference Page, Naik and Singh2020; Ritchie et al. Reference Ritchie, Gallopyn and Sheehan2021; Sleeman et al. Reference Sleeman, Cripps and Murtagh2022; Sterling et al. Reference Sterling, Tseng and Poon2020; Sumitha et al. Reference Sumitha, Thelly and Medona2022) and training in remote technologies (guidelines and the etiquette involved) were reported (Bayly et al. Reference Bayly, Bradshaw and Fettes2022; Dunleavy et al. Reference Dunleavy, Preston and Bajwah2021; Lalani et al. Reference Lalani, Cai and Wang2022; Ritchie et al. Reference Ritchie, Gallopyn and Sheehan2021; Wentlandt et al. Reference Wentlandt, Cook and Morgan2021). Educational materials related to COVID-19 and health services available were also disseminated to informal carers, families, and patients with varying levels of success in distribution (Dhavale et al. Reference Dhavale, Koparkar and Fernandes2020; Dunleavy et al. Reference Dunleavy, Preston and Bajwah2021; Franchini et al. Reference Franchini, Varani and Ostan2021; Luckett et al. Reference Luckett, Donkor and Phillips2021). Education services within palliative care organizations either ceased operation or moved to virtual delivery methods (both synchronous and asynchronous) (Bayly et al. Reference Bayly, Bradshaw and Fettes2022; Dunleavy et al. Reference Dunleavy, Preston and Bajwah2021; Sterling et al. Reference Sterling, Tseng and Poon2020).
Interprofessional coordination and collaboration
Several papers referred to challenges surrounding coordination between health-care professionals and health services (Dunleavy et al. Reference Dunleavy, Preston and Bajwah2021; Franchini et al. Reference Franchini, Varani and Ostan2021; Frey and Balmer Reference Frey and Balmer2022; Hasson et al. Reference Hasson, Slater and Fee2022; Tielker et al. Reference Tielker, Weber and Simon2021; Weisse and Melekis Reference Weisse and Melekis2021). This coordination extended to networking with nongovernmental organizations and basic services (e.g., groceries and financial assistance) to facilitate patient and family care (Dhavale et al. Reference Dhavale, Koparkar and Fernandes2020; Ritchie et al. Reference Ritchie, Gallopyn and Sheehan2021; Sumitha et al. Reference Sumitha, Thelly and Medona2022). Maintaining connections among GPs, specialist palliative care providers, allied health professionals, patients, and their families was frequently discussed, although maintaining these connections was often challenging (Dhavale et al. Reference Dhavale, Koparkar and Fernandes2020; Dunleavy et al. Reference Dunleavy, Preston and Bajwah2021; Franchini et al. Reference Franchini, Varani and Ostan2021; Frey and Balmer Reference Frey and Balmer2022; Hasson et al. Reference Hasson, Slater and Fee2022; Jansky et al. Reference Jansky, Schade and Rieder2021; Mitchell et al. Reference Mitchell, Oliver and Gardiner2021). In contrast, the pandemic sometimes provided the impetus for a long-needed integration of both within and across services or extended preexisting relationships (Bayly et al. Reference Bayly, Bradshaw and Fettes2022; Dunleavy et al. Reference Dunleavy, Preston and Bajwah2021; Hasson et al. Reference Hasson, Slater and Fee2022; Mitchell et al. Reference Mitchell, Harrison and Oliver2022; Page et al. Reference Page, Naik and Singh2020; Sumitha et al. Reference Sumitha, Thelly and Medona2022; Wentlandt et al. Reference Wentlandt, Cook and Morgan2021).
Physical and emotional well-being of health professional
The emotional and physical impacts of care delivery during the COVID-19 pandemic were included in several papers. These impacts included topics ranging from anxiety, fear, stress, and exhaustion to moral distress (Bayly et al. Reference Bayly, Bradshaw and Fettes2022; Costantini et al. Reference Costantini, Sleeman and Peruselli2020; Dunleavy et al. Reference Dunleavy, Preston and Bajwah2021; Franchini et al. Reference Franchini, Varani and Ostan2021; Frey and Balmer Reference Frey and Balmer2022; Hasson et al. Reference Hasson, Slater and Fee2022; Jansky et al. Reference Jansky, Schade and Rieder2021; Jones et al. Reference Jones, Lin and Durga2022; Kates et al. Reference Kates, Gerolamo and Pogorzelska-Maziarz2021; Lalani et al. Reference Lalani, Cai and Wang2022; Mitchell et al. Reference Mitchell, Harrison and Oliver2022; Ritchie et al. Reference Ritchie, Gallopyn and Sheehan2021; Rogers et al. Reference Rogers, Constantine and Thompson2021; Varani et al. Reference Varani, Ostan and Franchini2021). Health professionals’ fears for personal safety and the safety of patients and families were represented (Bayly et al. Reference Bayly, Bradshaw and Fettes2022; Costantini et al. Reference Costantini, Sleeman and Peruselli2020; Dunleavy et al. Reference Dunleavy, Preston and Bajwah2021; Frey and Balmer Reference Frey and Balmer2022; Hasson et al. Reference Hasson, Slater and Fee2022; Jansky et al. Reference Jansky, Schade and Rieder2021; Luckett et al. Reference Luckett, Donkor and Phillips2021; Ritchie et al. Reference Ritchie, Gallopyn and Sheehan2021; Sterling et al. Reference Sterling, Tseng and Poon2020). Changes in care delivery, team roles, and increased involvement in end-of-life care led to reports of emotional and physical exhaustion (Bayly et al. Reference Bayly, Bradshaw and Fettes2022; Franchini et al. Reference Franchini, Varani and Ostan2021; Jones et al. Reference Jones, Lin and Durga2022; Kates et al. Reference Kates, Gerolamo and Pogorzelska-Maziarz2021; Mitchell et al. Reference Mitchell, Oliver and Gardiner2021; Rogers et al. Reference Rogers, Constantine and Thompson2021; Varani et al. Reference Varani, Ostan and Franchini2021). Moral distress was associated with impacts on the ability to deliver holistic care related to telemedicine, social distancing, visiting restrictions, shortages of PPE, medications, staff resources, and organizational climate (Costantini et al. Reference Costantini, Sleeman and Peruselli2020; Jones et al. Reference Jones, Lin and Durga2022; Kates et al. Reference Kates, Gerolamo and Pogorzelska-Maziarz2021; Lalani et al. Reference Lalani, Cai and Wang2022). In contrast, 6 articles reported that health professional motivation, collaboration, and personal pride increased within the context of the pandemic (Bayly et al. Reference Bayly, Bradshaw and Fettes2022; Dunleavy et al. Reference Dunleavy, Preston and Bajwah2021; Franchini et al. Reference Franchini, Varani and Ostan2021; Luckett et al. Reference Luckett, Donkor and Phillips2021; Mitchell et al. Reference Mitchell, Harrison and Oliver2022; Rogers et al. Reference Rogers, Constantine and Thompson2021). Attempts at addressing health professional self-care (e.g., counseling, staff forums, and relaxation activities) were reported in 4 papers (Dunleavy et al. Reference Dunleavy, Preston and Bajwah2021; Luckett et al. Reference Luckett, Donkor and Phillips2021; Page et al. Reference Page, Naik and Singh2020; Sterling et al. Reference Sterling, Tseng and Poon2020).
Quality of care
Most papers reported on the challenges to the quality of patient care delivery (e.g., increased instances of patient decline either physically or psychologically) created by the requirements for infection control, new methods of virtual service delivery, and overstretched services (Bayly et al. Reference Bayly, Bradshaw and Fettes2022; Costantini et al. Reference Costantini, Sleeman and Peruselli2020; Dunleavy et al. Reference Dunleavy, Preston and Bajwah2021; Franchini et al. Reference Franchini, Varani and Ostan2021; Frey and Balmer Reference Frey and Balmer2022; Hasson et al. Reference Hasson, Slater and Fee2022; Jones et al. Reference Jones, Lin and Durga2022; Kates et al. Reference Kates, Gerolamo and Pogorzelska-Maziarz2021; Lalani et al. Reference Lalani, Cai and Wang2022; Luckett et al. Reference Luckett, Donkor and Phillips2021; Mitchell et al. Reference Mitchell, Oliver and Gardiner2021; Ritchie et al. Reference Ritchie, Gallopyn and Sheehan2021; Rogers et al. Reference Rogers, Constantine and Thompson2021; Tielker et al. Reference Tielker, Weber and Simon2021). A lack of closeness and personal contact were reported as issues with remote care delivery. The barriers created by PPE contribute to negative impacts on patients (Dunleavy et al. Reference Dunleavy, Preston and Bajwah2021; Franchini et al. Reference Franchini, Varani and Ostan2021; Frey and Balmer Reference Frey and Balmer2022; Hasson et al. Reference Hasson, Slater and Fee2022; Jones et al. Reference Jones, Lin and Durga2022; Kates et al. Reference Kates, Gerolamo and Pogorzelska-Maziarz2021; Lalani et al. Reference Lalani, Cai and Wang2022; Luckett et al. Reference Luckett, Donkor and Phillips2021; Mitchell et al. Reference Mitchell, Oliver and Gardiner2021; Ritchie et al. Reference Ritchie, Gallopyn and Sheehan2021; Rogers et al. Reference Rogers, Constantine and Thompson2021; Tielker et al. Reference Tielker, Weber and Simon2021). The delivery of bereavement services in the wake of COVID-19 restrictions also created anxiety and distress for health professionals and families (Dhavale et al. Reference Dhavale, Koparkar and Fernandes2020; Franchini et al. Reference Franchini, Varani and Ostan2021; Frey and Balmer Reference Frey and Balmer2022; Hasson et al. Reference Hasson, Slater and Fee2022).
Discussion
The pandemic produced many challenges both concerning the immediate health threats and as a result of the responses generated to those threats. Those health professional responses involved changes in communication, education, availability and distribution of resources, and interprofessional collaboration.
Communication
The developing situation experienced during the pandemic led to the production of huge amounts of information designed for the delivery of care. The situation was overwhelming and stressful for palliative care health professionals and patients to keep up with the most up-to-date information and access it in a timely manner. This theme resonated with the experiences of other frontline health-care professionals worldwide (Zarocostas Reference Zarocostas2020). For example, research by Collins (Reference Collins2020) has raised concerns that information overload may contribute to errors in daily practice. Ensuring that communication systems meet the needs of health-care professionals is vital to combat overload and to provide assurance that information needs are met to deliver quality palliative care. The importance of technology for communication at the end of life during the COVID-19 pandemic was also reported and often praised as an advancement in care and indeed did provide positive results in the delivery of care (Chua et al. Reference Chua, Olmsted and Plotke2022; Dunleavy et al. Reference Dunleavy, Preston and Bajwah2021; Lalani et al. Reference Lalani, Cai and Wang2022; Mitchell et al. Reference Mitchell, Harrison and Oliver2022; Page et al. Reference Page, Naik and Singh2020; Wentlandt et al. Reference Wentlandt, Cook and Morgan2021). However, these means of contact were no substitute for physical human presence and contact. Technology-assisted communication was not always sufficient to meet patients’ and families’ psychological, emotional, and spiritual needs (Chwistek Reference Chwistek2020; Frey and Balmer Reference Frey and Balmer2022). Post-pandemic palliative care delivery in the community should be directed toward a hybrid model of face-to-face and remote consultations in addition to training patients and families and providing funds for accessibility of the Internet and equipment (Garfan et al. Reference Garfan, Alamoodi and Zaidan2021; Rodin et al. Reference Rodin, Zimmermann and Rodin2020).
Education and training
The COVID-19 pandemic forced governments, health-care professional bodies, and organizations, as well as academic institutions, to identify novel methods to maintain both supply and current teaching and learning. However, there were challenges to making education both current and available with consequences for health professionals, informal carers, families, and patients. For example, a lack of training and educational materials could sometimes lead to perceptions of skills deficits, contributing to feelings of moral distress among health professionals (Frey and Balmer Reference Frey and Balmer2022). As identified by Fadul et al. (Reference Fadul, Elsayem and Bruera2021, 42), there is a need for new and creative “point of care training methods” for all health professionals delivering palliative care. This training should counterbalance the provision of education on palliative care principles and interventions while maintaining provider well-being (Fadul et al. Reference Fadul, Elsayem and Bruera2021).
Resources
Most articles reported shortages of supplies, including medications and PPE (Bayly et al. Reference Bayly, Bradshaw and Fettes2022; Costantini et al. Reference Costantini, Sleeman and Peruselli2020; Dhavale et al. Reference Dhavale, Koparkar and Fernandes2020; Franchini et al. Reference Franchini, Varani and Ostan2021; Hasson et al. Reference Hasson, Slater and Fee2022; Jansky et al. Reference Jansky, Schade and Rieder2021; Jones et al. Reference Jones, Lin and Durga2022; Luckett et al. Reference Luckett, Donkor and Phillips2021; Page et al. Reference Page, Naik and Singh2020; Ritchie et al. Reference Ritchie, Gallopyn and Sheehan2021; Rogers et al. Reference Rogers, Constantine and Thompson2021; Sterling et al. Reference Sterling, Tseng and Poon2020; Weisse and Melekis Reference Weisse and Melekis2021; Wentlandt et al. Reference Wentlandt, Cook and Morgan2021). Key among the resource challenges, however, was the availability of health professionals who were often overstretched and overburdened, similar to research reporting the experiences of other frontline health-care providers during the pandemic (Soares et al. Reference Soares, Oliveira and Mendes2022). The future of community palliative care will likely depend on the availability of professional workforces and caregivers (Horey et al. Reference Horey, Street and O’Connor2015). The current system for community palliative care mostly relies on unpaid informal caregivers (Burholt et al. Reference Burholt, Balmer and Frey2022). Evidence from this review suggests that care for patients in the end stage of life cannot be delivered solely by remote means. Caregivers can also be an important resource for setting technology during virtual visits (Lyu et al. Reference Lyu, Zhao and Yang2022). Successful delivery of palliative care in the community cannot be possible without addressing the needs of family caregivers (Burholt et al. Reference Burholt, Balmer and Frey2022).
Collaboration
COVID-19 also highlighted gaps in effective interprofessional collaboration (Dunleavy et al. Reference Dunleavy, Preston and Bajwah2021; Franchini et al. Reference Franchini, Varani and Ostan2021; Frey and Balmer Reference Frey and Balmer2022; Hasson et al. Reference Hasson, Slater and Fee2022; Tielker et al. Reference Tielker, Weber and Simon2021; Weisse and Melekis Reference Weisse and Melekis2021). Instances of miscommunication and duplication of services were reported. Community nurses, in particular, reported a sense of abandonment by general practices and specialist palliative care services (Frey and Balmer Reference Frey and Balmer2022; Mitchell et al. Reference Mitchell, Oliver and Gardiner2021). Opportunities to strengthen interprofessional relationships across primary care and with specialist palliative care colleagues through interdisciplinary training and collaborative approaches to patient care need to be further developed (Green and Taylor Reference Green, Taylor, Roberts and Green2021).
Well-being and quality of care
The challenges imposed by the pandemic in the delivery of palliative care and the varying levels of success of the health-care responses impacted the well-being of health professionals and, in turn, the well-being of patients and families. For health professionals, the delivery of palliative and end-of-life care in the community resulted in a high emotional burden, according to the literature showing how changes in service delivery, overwork, and the fear of infection may negatively impact the physical and psychological health of health-care professionals, leading to anxiety, depression, burnout syndrome, and other mental health concerns (Pappa et al. Reference Pappa, Ntella and Giannakas2020; Varani et al. Reference Varani, Ostan and Franchini2021). Family and carer impact from changes to care delivery was particularly noted in the area of bereavement. Family members who were restricted from being with their relatives during this crucial period face a greater likelihood of suffering from complicated grief (Wallace et al. Reference Wallace, Wladkowski and Gibson2020). Interventions delivering bereavement counseling must incorporate in-person and virtual means (including virtual support groups) to assist grieving carers and families (Laranjeira et al. Reference Laranjeira, Moura and Salci2022).
Lessons for the future
Reports of challenges to palliative care provision arising from inadequate access to the necessary resources, communication, education, and collaboration have been identified in this review. In this context, such challenges may negatively influence both health professional well-being and the experience of grief and future expectations of caregivers and family members. The impacts of these challenges may prolong this pandemic’s adverse outcomes for some communities for some time to come. As stated by Chapman et al. (Reference Chapman, Russell and Philip2020, 764), “The consequences of COVID-19 for palliative care systems are not simply instrumental or related to notions of changes in care ‘quality’ but fundamental to the central meaning of care.” While remote care delivery methods are likely to continue post-pandemic, whether health professionals can sustain a therapeutic relationship with patients and families remains to be seen. Perhaps a hybrid model of palliative care delivery may provide the best solution to care delivery moving forward (Vincent et al. Reference Vincent, Peixoto and Quinn2022).
More broadly, it is hoped that this pandemic will result in a better appreciation of the critical nature of palliative care. An aging population, increases in chronic morbidity (Vos et al. Reference Vos, Barber and Bell2015), the health pressures exacerbated by the climate crisis (Friel Reference Friel2020), worldwide palliative care inequity (Chapman et al. Reference Chapman, Russell and Philip2020), and potential future pandemics all underscore the significance and necessity of palliative care provision for quality care for all.
Limitations
To date, most articles on palliative care delivery in the community during the COVID-19 pandemic have used descriptive design and small sample surveys/interviews, limiting their generalizability (Hackshaw Reference Hackshaw2008). Furthermore, most studies combined findings from multiple settings rather than focusing on the community in depth, with differing findings as a result (Franchini et al. Reference Franchini, Varani and Ostan2021; Varani et al. Reference Varani, Ostan and Franchini2021). While some studies have examined the experiences of families and patients (Dobert et al. Reference Dobert, Sibley and Mustain2021; Feder et al. Reference Feder, Smith and Griffin2021; Ghosh et al. Reference Ghosh, Ganguly and Mondal2020), further research is required to measure outcomes of palliative care provision in the community (e.g., mortality of patients with chronic conditions) during COVID-19. Further research on equity issues in utilizing community palliative care services during the pandemic is required. Despite these limitations, the included articles provide valuable knowledge on the challenges in delivering community palliative care during COVID-19 with lessons for the future.
As with any research, this review also has limitations. Article inclusion criteria were limited to those articles published in English, and the gray literature was not searched. The scope of this review is also limited to the experiences of health professionals delivering palliative care in the community during the pandemic. While the experiences of health professionals, patients, and families are closely linked, and there are a few studies from diverse viewpoints (Bayly et al. Reference Bayly, Bradshaw and Fettes2022; Chou et al. Reference Chou, Yen and Feng2020; Dhavale et al. Reference Dhavale, Koparkar and Fernandes2020; Page et al. Reference Page, Naik and Singh2020), more studies from patient and family perspectives are required to examine the outcomes of palliative care delivery in the community during COVID-19.
Conclusions
This review synthesizes the current international evidence about the challenges experienced by health professionals delivering community palliative care during the COVID-19 pandemic. The pandemic has provided the impetus for rethinking flexible and innovative approaches to overcome the challenges of delivering palliative care. However, existing governmental and organizational policies require revision to improve communication, and additional resources are needed to prepare and support health professionals during times of crisis. Remote care delivery technology requires further evaluation and development to improve patient and family care. The significant negative impact of these challenges on health professionals, patients, and families must be addressed in addition to promoting effective interprofessional service delivery capable of adapting to changing situations.
Data availability statement
The data that support the findings of this study are available from the corresponding author upon reasonable request.
Acknowledgments
The authors would like to thank Dr. Aileen Collier, the University of Auckland, New Zealand, Prof. Bridget Johnston, the University of Glasgow, UK, and Ms. Jenny Thurston, Mercy Hospice for their collaboration on the project for which this review provided support.
Conflicts of interest
None declared.
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