key: cord-0717541-xwqhaaij authors: Etkind, Simon N.; Bone, Anna E.; Lovell, Natasha; Cripps, Rachel L.; Harding, Richard; Higginson, Irene J.; Sleeman, Katherine E. title: The role and response of palliative care and hospice services in epidemics and pandemics: a rapid review to inform practice during the COVID-19 pandemic date: 2020-04-08 journal: J Pain Symptom Manage DOI: 10.1016/j.jpainsymman.2020.03.029 sha: 9f75a36d8f57e382a717ee506b636cbdb355802a doc_id: 717541 cord_uid: xwqhaaij Cases of COVID-19 are escalating rapidly across the globe, with the mortality risk being especially high among those with existing illness and multimorbidity. This study aimed to synthesise evidence for the role and response of palliative care and hospice teams to viral epi/pandemics, to inform the COVID-19 pandemic response. We conducted a rapid systematic review according to PRISMA guidelines in five databases. Of 3094 papers identified, ten were included in this narrative synthesis. Included studies were from West Africa, Taiwan, Hong Kong, Singapore, the United States and Italy. All had an observational design. Findings were synthesised using a previously proposed framework according to ‘systems’ (policies, training and protocols, communication and coordination, data), ‘staff’ (deployment, skill mix, resilience), ‘space’ (community provision, use of technology) and ‘stuff’ (medicines and equipment, personal protective equipment). We conclude that hospice and palliative services have an essential role in the response to COVID-19 by: 1) responding rapidly and flexibly; 2) ensuring protocols for symptom management are available, and training non-specialists in their use; 3) being involved in triage; 4) considering shifting resources into the community; 5) considering redeploying volunteers to provide psychosocial and bereavement care; 6) facilitating camaraderie among staff and adopt measures to deal with stress; 7) using technology to communicate with patients and carers; 8) adopting standardised data collection systems to inform operational changes and improve care. The relief of suffering, supporting complex decision-making, and managing clinical uncertainty are key attributes of palliative care and essential components of the response to epidemics and pandemics. 1 The COVID-19 pandemic is escalating rapidly across the globe. Those affected experience symptoms including breathlessness, cough, myalgia and fever. The mortality risk is especially high among those with existing illness and multimorbidity. Pandemics such as that caused by COVID-19 can lead to a surge in demand for health care services, including palliative and end of life care. 2 These services must respond rapidly, adopting new ways of working as resources are suddenly stretched beyond their normal bounds. Globally, palliative care is now seen as an essential part of Universal Health Coverage. To inform the palliative care response to the COVID-19 pandemic, we aimed to rapidly synthesise evidence on the role and response of palliative care and hospice services to viral epi/pandemics. Viral epidemics or pandemics characterised by rapid transmission through the population and requiring a rapid response from the health system, including Ebola, SARS, MERS, Avian influenza, and COVID-19. HIV was excluded due to its slower transmission through the population. (Appendix A). We identified and screened the reference lists of relevant systematic reviews, government and NGO reports, opinion pieces, and included papers. One researcher (SNE) completed all searches and removed duplicate records. Papers were screened in EndNote using titles and abstracts by RLC, KES and SNE. Full texts were screened by KES and NL. A bespoke data extraction form was created in Excel. Data were extracted by two researchers (KES and NL) and checked by a third (AEB). We did not appraise the quality of included studies. We conducted narrative synthesis, and used the framework proposed by Downar and Seccareccia to group recommendations. 2 This framework, based on an established model of Intensive Care surge capacity, suggests that a palliative pandemic plan should include focus on 'systems', 'space', 'staff' and 'stuff'. 2 We identified 3088 papers from database searches (search date 18 th March 2020) and identified six additional papers through screening the reference lists of relevant papers and reports. After removing duplicates 2207 papers remained. 36 papers underwent full text review, and 10 were included in the analysis ( Figure 1 , Table 1 ). The 10 articles were published between 2004 and 2020. Two papers concerned planning for pandemics, 9,10 seven papers described data collected during epi/pandemics, [3] [4] [5] [6] [7] [8] 12 and one paper studied an epidemic retrospectively. 11 The settings included West Africa, 4-7 Taiwan, 11 Hong Kong, 8 Singapore, 12 the United States, 10 and Italy. 3 One paper had no defined setting. 9 Eight of the papers concerned specific epi/pandemics (including Ebola, 4-7 SARS, 11, 12 Influenza, 8, 9 and one on COVID-19 3 ). We synthesised findings according to Downar and Seccareccia model of systems, staff, space and stuff (Table 2 ). We provide the first evidence synthesis to guide hospice and palliative care teams in their response to the COVID-19 pandemic. Key findings were the need for teams to be flexible and rapidly redeploy resources in the face of changing need. For hospital teams this involves putting in place protocols for symptom control and training nonspecialists in their use. Hospice services may see a shift in need and should be prepared to focus their resources on community provision. This was a rapid review, and we did not assess quality of studies or grade our recommendations. We found existing evidence to be limited. All identified studies were observational, quantitative data were rare, and there were no studies with an experimental design. Most studies were from Asia or Africa, with one study from Europe and one from the United States. This reflects the fact that Europe and the United States are less experienced at responding to pandemics than other regions, and this may in turn result in a lack of preparedness to respond to COVID-19. While the importance of palliative care in response to pandemics has been well documented, 1, 13 this is not reflected in pandemic plans or in palliative care training, and the research literature is sparse. There were gaps in evidence, particularly around the role of palliative care teams in acute hospitals. There was also relatively little data on provision of palliative care in community settings, though in two studies a reduction in demand for inpatient care was seen and led to the suggestion to shift resources into the community. 3, 11 Community palliative care can facilitate advance care planning and symptom control and helps prevent hospital admissions among people near the end of life. 14 It is likely that community palliative care may help prevent hospital admissions among people dying from COVID-19 who would prefer to remain at home or in their care home, though this has not been tested. However, the rapid escalation of breathlessness in patients with COVID-19 who develop acute respiratory distress syndrome (ARDS) may make this challenging. 15 Severe breathlessness and respiratory disease are both known to be associated with increased hospital admissions at the end of life. 16 Therefore, rapid community response may be needed to manage advanced disease in COVID-19 if people are to remain at home. Two studies reported cessation of hospice volunteer services in response to pandemics. 3, 8 An alternative role for volunteers may be in provision of psychological support for patients and carers which could occur by using digital technology or telephones. In light of the social distancing measures being widely employed in response to COVID-19, volunteers may have a wider role in supporting communities for example helping the most vulnerable with shopping for food and medicines. Providing palliative care in pandemics can be compromised by the hostile environment, infection control mechanisms and extreme pressure on services. 8 In addition the family unit of care may be disrupted. Even so, provision of palliative care is an ethical imperative for those unlikely to survive, and may have the advantage of diverting dying people away from overburdened hospitals as well as providing the care that people want. 9 Pandemic situations introduce complex ethical challenges concerning allocation of scarce resources, and palliative care teams are well placed to help patients and carers discuss preferences and make advance care plans. Data collection systems to understand outcomes and share learning are important in a palliative pandemic response. However, these are frequently lacking. 7 Such data should ideally include numbers of patients seen, as well as their main symptoms and concerns, treatments, effectiveness of treatment and outcomes. There is also a need to understand the prevalence of palliative care needs that are not met by palliative and hospice services. In a pandemic expected to last for several months such as COVID-19, implementing systems of data collection early would help services to plan for and improve care, and could be used to project future needs. Providing holistic care in a pandemic can be compromised by extreme pressure on services. Hospice and palliative care services can mitigate against this by 1) maintaining the ability to respond rapidly and flexibly; 2) ensuring protocols for symptom management and psychological support are available, and non-specialists are trained in their use; 3) being involved in triage; 4) considering shifting resources from inpatient to community settings; 5) considering redeploying volunteers to provide psychosocial and bereavement care; 6) facilitating camaraderie among staff and adopting measures to deal with stress; 7) use of technology to communicate with patients and carers; 8) adopting standardised data collection systems to inform operational changes and improve care. Longer term priorities should include ensuring palliative and hospice care are integrated into pandemic plans. The authors have no conflicts of interest to declare. This research did not receive any specific grant from funding agencies in the public, • Require flexibility and rapid changes to systems and policies 3, 8 • Limiting visitor hours/ numbers 3, 8 • Change in admission criteria 3 • Systems of daily telephone support for families 3 • Stopping volunteer services 8 • Palliative care and hospice care should be part of the national and local epi/pandemic planning 9, 10 Training and Protocols • Palliative care protocols for non-specialist staff on management of symptoms and psychological support are essential 4, 5, 9, 10 • Training for site leads in the use of the protocols 10 • Education and training for non-specialist staff in basics of palliative care 6 • Rapid triage to assess likelihood of response to treatment 9 and recognition of dying 6 • Standardised information collection 7 • Continuous monitoring and evaluation to inform operational changes or quality of services 7 • Flexibility of deployment, such as moving staff from acute setting to the community 3, 11 • Sufficient staff numbers 6 • Restricting contact with volunteers for infection control 3 Moving to community provision • Consider shifting resources from inpatient to community settings where demand may be higher 3, 11 • Consider the setup of community care centres to expand outside hospital with standardised designs, include monitoring and evaluation instruments, and make use of training and supervision manuals. Community engagement to foster trust is important 7 • The role for virtual technology to enable communication, where visiting is restricted, for example providing a daily update for families 3, 8 Stuff • Relevant symptom medications should be included in formularies 10 , in the case of COVID-19breathlessness, cough, fever, delirium, anxiety, as well as pain • Basic supplies of medications, intravenous catheters and lines 4 • Access to diagnostic and monitoring equipment 5 • Sufficient supplies of PPE that are adaptable to the person 3,4 Full-text articles assessed for eligibility (n = 36) Full-text articles excluded, with reasons (n = 26 ) Not palliative care (n = 3 ) Narrative Review/Opinion Piece (n = 16) Unable to source full text (n = 4) Duplicate (n = 1) Not urgent response (n = 1) Other (n = 1) Studies included in synthesis (n = 10) Palliative care in humanitarian crisis: always something to offer Palliating a pandemic: "all patients must be cared for Response and role of palliative care during the COVID-19 pandemic: a national telephone survey of hospices in Italy Priorities, Barriers, and Facilitators towards International Guidelines for the Delivery of Supportive Clinical Care during an Ebola Outbreak: A Cross-Sectional Survey Barriers to supportive care during the Ebola virus disease outbreak in West Africa: Results of a qualitative study Palliative care conundrums in an Ebola treatment centre Innovation to confront Ebola in Sierra Leone: the community-care-centre model The first confirmed case of human avian influenza A(H7N9) in Hong Kong and the suspension of volunteer services: impact on palliative care Palliative care considerations in mass casualty events with scarce resources Pandemic influenza and acute care centres: taking care of sick patients in a nonhospital setting Hospice utilization during the SARS outbreak in Taiwan The challenge of providing holistic care in a viral epidemic: opportunities for palliative care A central role for palliative care in an influenza pandemic Effectiveness and cost-effectiveness of home palliative care services for adults with advanced illness and their caregivers Risk Factors Associated with Acute Respiratory Distress Syndrome and Death in Patients With Coronavirus Disease Factors Associated with Transition from Community Settings to Hospital as Place of Death for Adults Aged 75 and Older: A Population-Based Mortality Follow-Back Survey