Advertisement

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

      Abstract

      Cases of coronavirus disease 2019 (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 synthesize evidence for the role and response of palliative care and hospice teams to viral epidemics/pandemics and inform the COVID-19 pandemic response. We conducted a rapid systematic review according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines in five databases. Of 3094 articles identified, 10 were included in this narrative synthesis. Included studies were from West Africa, Taiwan, Hong Kong, Singapore, the U.S., and Italy. All had an observational design. Findings were synthesized using a previously proposed framework according to systems (policies, training and protocols, communication and coordination, and data), staff (deployment, skill mix, and resilience), space (community provision and use of technology), and stuff (medicines and equipment as well as personal protective equipment). We conclude that hospice and palliative services have an essential role in the response to COVID-19 by responding rapidly and flexibly; ensuring protocols for symptom management are available, and training nonspecialists in their use; being involved in triage; considering shifting resources into the community; considering redeploying volunteers to provide psychosocial and bereavement care; facilitating camaraderie among staff and adopting measures to deal with stress; using technology to communicate with patients and carers; and adopting standardized data collection systems to inform operational changes and improve care.

      Key Words

      Key Message

      An evidence synthesis on the role and response of hospice and palliative care in epidemics/pandemics to inform response to coronavirus disease 2019. Hospice and palliative care services should respond rapidly and flexibly, produce protocols, shift resources to the community, redeploy volunteers, facilitate staff camaraderie, communicate with patients/carers via technology, and standardize data collection.

      Introduction

      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.
      • Powell R.A.
      • Schwartz L.
      • Nouvet E.
      • et al.
      Palliative care in humanitarian crisis: always something to offer.
      The coronavirus disease 2019 (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.
      • Downar J.
      • Seccareccia D.
      Palliating a pandemic: “all patients must be cared for”.
      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 synthesize evidence on the role and response of palliative care and hospice services to viral epidemics/pandemics.

      Methods

      Design

      Rapid systematic review according to Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines.

      Inclusion/Exclusion Criteria

      • Population—patients, carers, health care professionals, other experts, wards, units, and services
      • Intervention—palliative care, hospice care, end-of-life care, and supportive care
      • Context—viral epidemics or pandemics characterized by rapid transmission through the population and requiring a rapid response from the health system, including Ebola, severe acute respiratory syndrome, Middle East respiratory syndrome, avian influenza, and COVID-19. HIV was excluded because of its slower transmission through the population.
      • Findings—role and/or response of palliative care and hospice services
      • Study design—case studies, cross-sectional studies, cohort studies, and intervention studies (opinion pieces and editorials excluded)
      • Language—no limits

      Search Strategy

      We searched five databases (MEDLINE [1966–2019], Embase [1980–2019], PsycINFO [1967–2019], CINAHL [1982–2019], and Web of Science [1970–2019]). The search strategy comprised terms for palliative care, hospice care, and end-of-life care as well as terms for pandemics and epidemics including specific named pandemics (Appendix). We identified and screened the reference lists of relevant systematic reviews, government and nongovernmental organization reports, opinion pieces, and included articles.

      Study Selection

      One researcher (S. N. E.) completed all searches and removed duplicate records. Articles were screened in EndNote (version X9, Clarivate Analytics, Philadelphia, PA) using titles and abstracts by R. L. C., K. E. S., and S. N. E. Full texts were screened by K. E. S. and N. L.

      Data Extraction

      A bespoke data extraction form was created in Excel (Microsoft Corporation, Redmond, WA). Data were extracted by two researchers (K. E. S. and N. L.) and checked by a third researcher (A. E. B.). We did not appraise the quality of included studies.

      Analysis

      We conducted narrative synthesis and used the framework proposed by Downar and Seccareccia
      • Downar J.
      • Seccareccia D.
      Palliating a pandemic: “all patients must be cared for”.
      to group recommendations. 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.
      • Downar J.
      • Seccareccia D.
      Palliating a pandemic: “all patients must be cared for”.

      Results

      We identified 3088 articles from database searches (search date: March 18, 2020) and identified six additional articles through screening the reference lists of relevant articles and reports. After removing duplicates, 2207 articles remained. Thirty six articles underwent full-text review, and 10 articles were included in the analysis (Fig. 1; Table 1).
      Figure thumbnail gr1
      Fig. 1Preferred Reporting Items for Systematic Reviews and Meta-Analyses flowchart.
      Table 1Description of Included Studies
      Authors, yrContextStudy AimStudy DesignSetting/ParticipantsFindings and Author Recommendations
      Costantini et al., 2020
      • Costantini M.
      • Sleeman K.E.
      • Peruselli C.
      • Higginson I.J.
      Response and role of palliative care during the COVID-19 pandemic: a national telephone survey of hospices in Italy.
      Italy, coronavirus (COVID-19)To examine the preparedness for and impact of COVID-19 on hospices in Italy to help inform the responses of other countriesCross-sectional telephone survey16 hospicesHospice response to COVID-19:
      • All hospices had rapidly implemented changes in practice, including transfer of staff to community settings, changes in admission criteria, and daily telephone support for families
      • Lack of PPE
      • Lack of hospice-specific guidance
      • Assessments of risk and potential impact on staff varied greatly
      Authors recommended that governments urgently recognize the essential contribution of hospice and palliative care to the COVID-19 pandemic and ensure these services are integrated into the health care system response. Availability of PPE and setting-specific guidance is essential
      Battista et al., 2019
      • Battista M.C.
      • Loignon C.
      • Benhadi L.
      • et al.
      Priorities, barriers, and facilitators towards international guidelines for the delivery of supportive clinical care during an ebola outbreak: a cross-sectional survey.
      West Africa, EVDTo identify care measures and barriers and facilitators to their implementation for patients with EVDCross-sectional online survey29 clinicians and decision makers (24 physicians, three nurses, and two involved in project management and coordination)Barriers to the provision of supportive care:
      • Insufficient numbers of health workers (maintenance, surveillance, and laboratory professionals)
      • Improper tools to document clinical data
      • Insufficient material resources (drug supplies, intravenous catheters, and lines)
      • Unadapted PPE
      • Limited sharing of protocols, advice, and standards of care within organizations
      Facilitators to the provision of supportive care:
      • Team camaraderie
      • Ability to speak the local language
      • Treatment protocols in place
      Authors recommended that these areas of consensus are incorporated into guidelines to ensure standards of care are met
      Loignon et al., 2018
      • Loignon C.
      • Nouvet E.
      • Couturier F.
      • et al.
      Barriers to supportive care during the Ebola virus disease outbreak in West Africa: results of a qualitative study.
      West Africa, EVDTo document barriers to supportive care in Ebola treatment unitsQualitative telephone interviews29 clinicians and decision makers, comprising 25 physicians, three nurses, and one otherBarriers to the provision of supportive care:
      • Lack of material and human resources (access to diagnostic and monitoring equipment)
      • Organizational structure limited the provision of clinical care (lack of protocols and deficient management structures)
      • Delayed and poorly coordinated policies limited the effectiveness of global and national response (insufficient political leadership and early epidemiological surveillance)
      Authors recommended that relevant protocols are available, and organizational structures are improved to provide supportive care in future outbreaks
      Dhillon et al., 2015
      • Dhillon P.
      • McCarthy S.
      • Gibbs M.
      • Sue K.
      Palliative care conundrums in an Ebola treatment centre.
      West Africa, EVDTo describe the treatment course of a man admitted to an Ebola treatment center and to describe some of the challenges identifiedCase reportOne 33-yr-old man admitted to an Ebola treatment center who died from Ebola-related complications 18 days laterChallenges identified in providing care for an Ebola patient:
      • Lack of consistency/continuity of staff
      • A decision maker was not identified
      • No recognition that the patient was dying
      • There was emphasis on saving life, and any protocols specific to palliative care were not implemented
      Authors recommend that communication is paramount in an environment where there are multiple caregivers, identification of a lead decision maker is helpful, and knowledge of the basics of palliative is essential, particularly in low-resource settings
      Michaels-Strasser et al., 2015
      • Michaels-Strasser S.
      • Rabkin M.
      • Lahuerta M.
      • et al.
      Innovation to confront Ebola in Sierra Leone: the community-care-centre model.
      Sierra Leone, EVDTo assess the outcome or effectiveness of community care centers for rapid isolation and palliative care of people with suspected Ebola diseaseCross-sectional assessment using direct observation, a site assessment survey, and staff interviews11 community care centers and 58 key informantsDescription and assessment of community care centers:
      • Centers ranged from tents to repurposed hospital wards and schools and were set up swiftly (median 10 days)
      • Common features were proximity to community, small size (8–28 beds), ability to triage and isolate cases, and transport to Ebola treatment units when beds became available
      • Community care centers engaged and supported communities and fostered trust
      • Limited data to assess effectiveness, with registers and forms not standardized
      Authors recommended that the creation of community care centers could be an effective and scalable response, if they have standardized design, include monitoring and evaluation instruments, and training and supervision manuals
      Cheng et al., 2014
      • Cheng H.W.
      • Li C.W.
      • Chan K.Y.
      • Sham M.K.
      The first confirmed case of human avian influenza A(H7N9) in Hong Kong and the suspension of volunteer services: impact on palliative care.
      Hong Kong, avian influenzaTo explain measures taken by palliative care services in Hong Kong during the H7N9 influenzaCase study of a serviceThe first confirmed case of human avian influenza A (H7N9)Response to avian influenza within a palliative care unit:
      • Visiting hours for palliative units were limited to less than four hours per day, with not more than two visitors per visit
      • Visitors to public hospitals were required to put on surgical masks and perform hand hygiene before and after visiting patient areas
      • Volunteer services and clinical attachment in public hospitals were suspended
      • The palliative unit handled the restriction on family visits on compassionate grounds
      Authors highlight the ethical dilemma that arises between dual need for infection control and comprehensive psychosocial care, with volunteers being integral to the interdisciplinary model of palliative care
      Matzo et al., 2009
      • Matzo M.
      • Wilkinson A.
      • Lynn J.
      • Gatto M.
      • Phillips S.
      Palliative care considerations in mass casualty events with scarce resources.
      Hypothetical mass casualty event from an influenza pandemic or other eventTo understand the role of palliative care in mass casualty events and to make recommendationsQualitative telephone interviews and group meeting with experts10 disaster management and public health expertsIssues for palliative care in mass casualty event:
      • Role of palliative care with scarce resources
      • Treatment decisions of those likely to die
      • Knowing what palliative care services to provide, along with personnel and settings
      • Ensuring training, supplies, and organisational or jurisdictional arrangements
      Authors recommended:
      • Training for nonpalliative care professionals in management of symptoms and psychological support
      • Plan for management of specific populations (elderly at home, those with learning disabilities)
      • Planning for and ensuring ethical allocation of scarce resources
      • Ensuring provision of palliative care at all medical care sites
      Planning to provide palliative care during mass casualty events should be part of the current national and local disaster planning for training guidelines, protocols, and activities
      Cinti et al., 2008
      • Cinti S.K.
      • Wilkerson W.
      • Holmes J.G.
      • et al.
      Pandemic influenza and acute care centres: taking care of sick patients in a nonhospital setting.
      U.S., simulation exerciseTo describe learning after simulation exercises for pandemic eventsSimulation exercises with recommendationsA large tertiary care center with 913 bedsAn ACC was described as four pods accommodating a total of 250 patients, providing limited supportive care for noncritical pandemic influenza patients and some who would require palliative care

      Authors concluded that: more attention was needed on palliative care and fatality management; plans should include involvement of clergy; palliative care protocols are essential, and there should be training for site leads in their use; and palliation medications should be included on the formulary
      Chen et al., 2006
      • Chen T.
      • Lin M.
      • Chou L.
      • Hwang S.
      Hospice utilization during the SARS outbreak in Taiwan.
      Taiwan, SARSTo describe changes in hospice inpatient utilization during and after the SARS epidemic in 2003 in TaiwanRetrospective study using administrative dataHospice wards within 15 hospitalsChanges in hospice inpatient utilization during SARS epidemic:

      During the peak SARS period, the number of admissions to the 15 hospice wards decreased to 69% of those in the previous year, and inpatient day units reduced to 54%. It was not known whether the decrease in utilization was due to patients' voluntary decisions or hospital policies, and the study could not determine whether the needs of patients with terminal illnesses were met during the epidemic

      The authors concluded that the ability to shift resources from inpatient to community settings would improve care and that seamless continuity of care between facilities and settings should be ensured at all times
      Leong et al., 2004
      • Leong I.Y.
      • Lee A.O.
      • Ng T.W.
      • et al.
      The challenge of providing holistic care in a viral epidemic: opportunities for palliative care.
      Singapore, SARSTo describe the psychosocial impact of providing holistic care in an epidemicQualitative interviewsEight health care professionals (doctors, nurses, social workers, and pharmacists) in a palliative care unitPsychosocial impact of providing holistic care in an epidemic:
      • Consequences of isolation
      • Impact of uncertainty creating difficulties for patients, families, and staff in preparing for death
      • Impact for health care workers (risk of contracting disease and not being able to grieve)
      • Disruption of bereavement for families (management of bodies after deaths)
      Authors recommend that in an epidemic palliative care should include measures to improve connectedness, training in communication and bereavement counseling, and measures to help health care workers deal with stress
      COVID-19 = coronavirus disease 2019; PPE = personal protective equipment; EVD = Ebola virus disease; ACC = alternative care center; SARS = severe acute respiratory syndrome.
      The 10 articles were published between 2004 and 2020. Two articles concerned planning for pandemics,
      • Matzo M.
      • Wilkinson A.
      • Lynn J.
      • Gatto M.
      • Phillips S.
      Palliative care considerations in mass casualty events with scarce resources.
      ,
      • Cinti S.K.
      • Wilkerson W.
      • Holmes J.G.
      • et al.
      Pandemic influenza and acute care centres: taking care of sick patients in a nonhospital setting.
      seven articles described data collected during epidemics/pandemics,
      • Costantini M.
      • Sleeman K.E.
      • Peruselli C.
      • Higginson I.J.
      Response and role of palliative care during the COVID-19 pandemic: a national telephone survey of hospices in Italy.
      • Battista M.C.
      • Loignon C.
      • Benhadi L.
      • et al.
      Priorities, barriers, and facilitators towards international guidelines for the delivery of supportive clinical care during an ebola outbreak: a cross-sectional survey.
      • Loignon C.
      • Nouvet E.
      • Couturier F.
      • et al.
      Barriers to supportive care during the Ebola virus disease outbreak in West Africa: results of a qualitative study.
      • Dhillon P.
      • McCarthy S.
      • Gibbs M.
      • Sue K.
      Palliative care conundrums in an Ebola treatment centre.
      • Michaels-Strasser S.
      • Rabkin M.
      • Lahuerta M.
      • et al.
      Innovation to confront Ebola in Sierra Leone: the community-care-centre model.
      • Cheng H.W.
      • Li C.W.
      • Chan K.Y.
      • Sham M.K.
      The first confirmed case of human avian influenza A(H7N9) in Hong Kong and the suspension of volunteer services: impact on palliative care.
      • Leong I.Y.
      • Lee A.O.
      • Ng T.W.
      • et al.
      The challenge of providing holistic care in a viral epidemic: opportunities for palliative care.
      and one article studied an epidemic retrospectively.
      • Chen T.
      • Lin M.
      • Chou L.
      • Hwang S.
      Hospice utilization during the SARS outbreak in Taiwan.
      The settings included West Africa,
      • Battista M.C.
      • Loignon C.
      • Benhadi L.
      • et al.
      Priorities, barriers, and facilitators towards international guidelines for the delivery of supportive clinical care during an ebola outbreak: a cross-sectional survey.
      • Loignon C.
      • Nouvet E.
      • Couturier F.
      • et al.
      Barriers to supportive care during the Ebola virus disease outbreak in West Africa: results of a qualitative study.
      • Dhillon P.
      • McCarthy S.
      • Gibbs M.
      • Sue K.
      Palliative care conundrums in an Ebola treatment centre.
      • Michaels-Strasser S.
      • Rabkin M.
      • Lahuerta M.
      • et al.
      Innovation to confront Ebola in Sierra Leone: the community-care-centre model.
      Taiwan,
      • Chen T.
      • Lin M.
      • Chou L.
      • Hwang S.
      Hospice utilization during the SARS outbreak in Taiwan.
      Hong Kong,
      • Cheng H.W.
      • Li C.W.
      • Chan K.Y.
      • Sham M.K.
      The first confirmed case of human avian influenza A(H7N9) in Hong Kong and the suspension of volunteer services: impact on palliative care.
      Singapore,
      • Leong I.Y.
      • Lee A.O.
      • Ng T.W.
      • et al.
      The challenge of providing holistic care in a viral epidemic: opportunities for palliative care.
      the U.S.,
      • Cinti S.K.
      • Wilkerson W.
      • Holmes J.G.
      • et al.
      Pandemic influenza and acute care centres: taking care of sick patients in a nonhospital setting.
      and Italy.
      • Costantini M.
      • Sleeman K.E.
      • Peruselli C.
      • Higginson I.J.
      Response and role of palliative care during the COVID-19 pandemic: a national telephone survey of hospices in Italy.
      One article had no defined setting.
      • Matzo M.
      • Wilkinson A.
      • Lynn J.
      • Gatto M.
      • Phillips S.
      Palliative care considerations in mass casualty events with scarce resources.
      Eight of the articles concerned specific epidemics/pandemics (including Ebola,
      • Battista M.C.
      • Loignon C.
      • Benhadi L.
      • et al.
      Priorities, barriers, and facilitators towards international guidelines for the delivery of supportive clinical care during an ebola outbreak: a cross-sectional survey.
      • Loignon C.
      • Nouvet E.
      • Couturier F.
      • et al.
      Barriers to supportive care during the Ebola virus disease outbreak in West Africa: results of a qualitative study.
      • Dhillon P.
      • McCarthy S.
      • Gibbs M.
      • Sue K.
      Palliative care conundrums in an Ebola treatment centre.
      • Michaels-Strasser S.
      • Rabkin M.
      • Lahuerta M.
      • et al.
      Innovation to confront Ebola in Sierra Leone: the community-care-centre model.
      severe acute respiratory syndrome,
      • Leong I.Y.
      • Lee A.O.
      • Ng T.W.
      • et al.
      The challenge of providing holistic care in a viral epidemic: opportunities for palliative care.
      ,
      • Chen T.
      • Lin M.
      • Chou L.
      • Hwang S.
      Hospice utilization during the SARS outbreak in Taiwan.
      influenza,
      • Matzo M.
      • Wilkinson A.
      • Lynn J.
      • Gatto M.
      • Phillips S.
      Palliative care considerations in mass casualty events with scarce resources.
      ,
      • Cheng H.W.
      • Li C.W.
      • Chan K.Y.
      • Sham M.K.
      The first confirmed case of human avian influenza A(H7N9) in Hong Kong and the suspension of volunteer services: impact on palliative care.
      and one on COVID-19
      • Matzo M.
      • Wilkinson A.
      • Lynn J.
      • Gatto M.
      • Phillips S.
      Palliative care considerations in mass casualty events with scarce resources.
      ).
      We synthesized findings according to Downar and Seccareccia model of systems, staff, space, and stuff (Table 2).
      Table 2Synthesis of Evidence and Recommendations for the Palliative Care Response to COVID-19
      Systems
      • Policies
        • Require flexibility and rapid changes to systems and policies
          • Costantini M.
          • Sleeman K.E.
          • Peruselli C.
          • Higginson I.J.
          Response and role of palliative care during the COVID-19 pandemic: a national telephone survey of hospices in Italy.
          ,
          • Cheng H.W.
          • Li C.W.
          • Chan K.Y.
          • Sham M.K.
          The first confirmed case of human avian influenza A(H7N9) in Hong Kong and the suspension of volunteer services: impact on palliative care.
        • Limiting visitor hours/numbers
          • Costantini M.
          • Sleeman K.E.
          • Peruselli C.
          • Higginson I.J.
          Response and role of palliative care during the COVID-19 pandemic: a national telephone survey of hospices in Italy.
          ,
          • Cheng H.W.
          • Li C.W.
          • Chan K.Y.
          • Sham M.K.
          The first confirmed case of human avian influenza A(H7N9) in Hong Kong and the suspension of volunteer services: impact on palliative care.
        • Change in admission criteria
          • Costantini M.
          • Sleeman K.E.
          • Peruselli C.
          • Higginson I.J.
          Response and role of palliative care during the COVID-19 pandemic: a national telephone survey of hospices in Italy.
        • Systems of daily telephone support for families
          • Costantini M.
          • Sleeman K.E.
          • Peruselli C.
          • Higginson I.J.
          Response and role of palliative care during the COVID-19 pandemic: a national telephone survey of hospices in Italy.
        • Stopping volunteer services
          • Cheng H.W.
          • Li C.W.
          • Chan K.Y.
          • Sham M.K.
          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 and hospice care should be part of the national and Local epidemic/pandemic planning
          • Matzo M.
          • Wilkinson A.
          • Lynn J.
          • Gatto M.
          • Phillips S.
          Palliative care considerations in mass casualty events with scarce resources.
          ,
          • Cinti S.K.
          • Wilkerson W.
          • Holmes J.G.
          • et al.
          Pandemic influenza and acute care centres: taking care of sick patients in a nonhospital setting.
      • Training and protocols
        • Palliative care protocols for nonspecialist staff on management of symptoms and psychological support are essential
          • Matzo M.
          • Wilkinson A.
          • Lynn J.
          • Gatto M.
          • Phillips S.
          Palliative care considerations in mass casualty events with scarce resources.
          ,
          • Cinti S.K.
          • Wilkerson W.
          • Holmes J.G.
          • et al.
          Pandemic influenza and acute care centres: taking care of sick patients in a nonhospital setting.
          ,
          • Battista M.C.
          • Loignon C.
          • Benhadi L.
          • et al.
          Priorities, barriers, and facilitators towards international guidelines for the delivery of supportive clinical care during an ebola outbreak: a cross-sectional survey.
          ,
          • Loignon C.
          • Nouvet E.
          • Couturier F.
          • et al.
          Barriers to supportive care during the Ebola virus disease outbreak in West Africa: results of a qualitative study.
        • Training for site leads in the use of the protocols
          • Cinti S.K.
          • Wilkerson W.
          • Holmes J.G.
          • et al.
          Pandemic influenza and acute care centres: taking care of sick patients in a nonhospital setting.
        • Education and training for nonspecialist staff in basics of palliative care,
          • Dhillon P.
          • McCarthy S.
          • Gibbs M.
          • Sue K.
          Palliative care conundrums in an Ebola treatment centre.
          including in communication and bereavement counseling
          • Leong I.Y.
          • Lee A.O.
          • Ng T.W.
          • et al.
          The challenge of providing holistic care in a viral epidemic: opportunities for palliative care.
        • Consider separate guidelines for specific populations such as people in care homes and those with intellectual disabilities
          • Matzo M.
          • Wilkinson A.
          • Lynn J.
          • Gatto M.
          • Phillips S.
          Palliative care considerations in mass casualty events with scarce resources.
      • Communication and coordination
        • Sharing of protocols, advice, and standards of care within organizations
          • Battista M.C.
          • Loignon C.
          • Benhadi L.
          • et al.
          Priorities, barriers, and facilitators towards international guidelines for the delivery of supportive clinical care during an ebola outbreak: a cross-sectional survey.
        • Identification of a decision maker to improve communication, particularly where multiple health professionals may be involved outside their usual practice
          • Dhillon P.
          • McCarthy S.
          • Gibbs M.
          • Sue K.
          Palliative care conundrums in an Ebola treatment centre.
        • Rapid triage to assess likelihood of response to treatment
          • Matzo M.
          • Wilkinson A.
          • Lynn J.
          • Gatto M.
          • Phillips S.
          Palliative care considerations in mass casualty events with scarce resources.
          and recognition of dying
          • Dhillon P.
          • McCarthy S.
          • Gibbs M.
          • Sue K.
          Palliative care conundrums in an Ebola treatment centre.
      • Data
      Staff
      • Deployment of staff
        • Flexibility of deployment, such as moving staff from acute setting to the community
          • Costantini M.
          • Sleeman K.E.
          • Peruselli C.
          • Higginson I.J.
          Response and role of palliative care during the COVID-19 pandemic: a national telephone survey of hospices in Italy.
          ,
          • Chen T.
          • Lin M.
          • Chou L.
          • Hwang S.
          Hospice utilization during the SARS outbreak in Taiwan.
        • Sufficient staff numbers
          • Dhillon P.
          • McCarthy S.
          • Gibbs M.
          • Sue K.
          Palliative care conundrums in an Ebola treatment centre.
        • Restricting contact with volunteers for infection control,
          • Costantini M.
          • Sleeman K.E.
          • Peruselli C.
          • Higginson I.J.
          Response and role of palliative care during the COVID-19 pandemic: a national telephone survey of hospices in Italy.
          ,
          • Cheng H.W.
          • Li C.W.
          • Chan K.Y.
          • Sham M.K.
          The first confirmed case of human avian influenza A(H7N9) in Hong Kong and the suspension of volunteer services: impact on palliative care.
          whereas acknowledging volunteers are integral to the interdisciplinary model in palliative care and can make important contributions to psychosocial and bereavement care
          • Cheng H.W.
          • Li C.W.
          • Chan K.Y.
          • Sham M.K.
          The first confirmed case of human avian influenza A(H7N9) in Hong Kong and the suspension of volunteer services: impact on palliative care.
      • Skill mix of staff
        • Involving spiritual care and chaplains in the pandemic response
          • Matzo M.
          • Wilkinson A.
          • Lynn J.
          • Gatto M.
          • Phillips S.
          Palliative care considerations in mass casualty events with scarce resources.
          ,
          • Cinti S.K.
          • Wilkerson W.
          • Holmes J.G.
          • et al.
          Pandemic influenza and acute care centres: taking care of sick patients in a nonhospital setting.
        • Involving psychologists with expertise in palliative care
          • Matzo M.
          • Wilkinson A.
          • Lynn J.
          • Gatto M.
          • Phillips S.
          Palliative care considerations in mass casualty events with scarce resources.
      • Ensuring resilience of staff
        • Facilitating camaraderie among staff important to minimize negative psychosocial effects on staff, which include distress about risks of contracting the disease, grieving relatives, or friends while working
          • Battista M.C.
          • Loignon C.
          • Benhadi L.
          • et al.
          Priorities, barriers, and facilitators towards international guidelines for the delivery of supportive clinical care during an ebola outbreak: a cross-sectional survey.
        • Measures to improve connectedness among staff
          • Leong I.Y.
          • Lee A.O.
          • Ng T.W.
          • et al.
          The challenge of providing holistic care in a viral epidemic: opportunities for palliative care.
        • Training in communication and bereavement counseling
          • Leong I.Y.
          • Lee A.O.
          • Ng T.W.
          • et al.
          The challenge of providing holistic care in a viral epidemic: opportunities for palliative care.
        • Measures to help health care workers deal with stress
          • Leong I.Y.
          • Lee A.O.
          • Ng T.W.
          • et al.
          The challenge of providing holistic care in a viral epidemic: opportunities for palliative care.
      Space
      • Moving to community provision
        • Consider shifting resources from inpatient to community settings where demand may be higher
          • Costantini M.
          • Sleeman K.E.
          • Peruselli C.
          • Higginson I.J.
          Response and role of palliative care during the COVID-19 pandemic: a national telephone survey of hospices in Italy.
          ,
          • Chen T.
          • Lin M.
          • Chou L.
          • Hwang S.
          Hospice utilization during the SARS outbreak in Taiwan.
        • Consider the setup of community care centers to expand outside hospital with standardized designs, include monitoring and evaluation instruments, and make use of training and supervision manuals. Community engagement to foster trust is important
          • Michaels-Strasser S.
          • Rabkin M.
          • Lahuerta M.
          • et al.
          Innovation to confront Ebola in Sierra Leone: the community-care-centre model.
      • Use of technology
        • The role for virtual technology to enable communication, where visiting is restricted, for example, providing a daily update for families
          • Costantini M.
          • Sleeman K.E.
          • Peruselli C.
          • Higginson I.J.
          Response and role of palliative care during the COVID-19 pandemic: a national telephone survey of hospices in Italy.
          ,
          • Cheng H.W.
          • Li C.W.
          • Chan K.Y.
          • Sham M.K.
          The first confirmed case of human avian influenza A(H7N9) in Hong Kong and the suspension of volunteer services: impact on palliative care.
      Stuff
      • Medicines and equipment
        • Relevant symptom medications should be included in formularies,
          • Cinti S.K.
          • Wilkerson W.
          • Holmes J.G.
          • et al.
          Pandemic influenza and acute care centres: taking care of sick patients in a nonhospital setting.
          in the case of COVID-19—breathlessness, cough, fever, delirium, anxiety, as well as pain
        • Basic supplies of medications, intravenous catheters, and lines
          • Battista M.C.
          • Loignon C.
          • Benhadi L.
          • et al.
          Priorities, barriers, and facilitators towards international guidelines for the delivery of supportive clinical care during an ebola outbreak: a cross-sectional survey.
        • Access to diagnostic and monitoring equipment
          • Loignon C.
          • Nouvet E.
          • Couturier F.
          • et al.
          Barriers to supportive care during the Ebola virus disease outbreak in West Africa: results of a qualitative study.
      • PPE
        • Sufficient supplies of PPE that are adaptable to the person
          • Costantini M.
          • Sleeman K.E.
          • Peruselli C.
          • Higginson I.J.
          Response and role of palliative care during the COVID-19 pandemic: a national telephone survey of hospices in Italy.
          ,
          • Battista M.C.
          • Loignon C.
          • Benhadi L.
          • et al.
          Priorities, barriers, and facilitators towards international guidelines for the delivery of supportive clinical care during an ebola outbreak: a cross-sectional survey.
      COVID-19 = coronavirus disease 2019; PPE = personal protective equipment.

      Discussion

      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 U.S. This reflects the fact that Europe and the U.S. 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. Although the importance of palliative care in response to pandemics has been well documented,
      • Powell R.A.
      • Schwartz L.
      • Nouvet E.
      • et al.
      Palliative care in humanitarian crisis: always something to offer.
      ,
      • Rosoff P.M.
      A central role for palliative care in an influenza pandemic.
      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, although in two studies, a reduction in demand for inpatient care was seen and led to the suggestion to shift resources into the community.
      • Costantini M.
      • Sleeman K.E.
      • Peruselli C.
      • Higginson I.J.
      Response and role of palliative care during the COVID-19 pandemic: a national telephone survey of hospices in Italy.
      ,
      • Chen T.
      • Lin M.
      • Chou L.
      • Hwang S.
      Hospice utilization during the SARS outbreak in Taiwan.
      Community palliative care can facilitate advance care planning and symptom control and helps prevent hospital admissions among people near the end of life.
      • Gomes B.
      • Calanzani N.
      • Curiale V.
      • McCrone P.
      • Higginson I.J.
      Effectiveness and cost-effectiveness of home palliative care services for adults with advanced illness and their caregivers.
      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, although this has not been tested. However, the rapid escalation of breathlessness in patients with COVID-19 who develop acute respiratory distress syndrome may make this challenging.
      • Wu C.
      • Chen X.
      • Cai Y.
      • et al.
      Risk factors associated with acute respiratory distress syndrome and death in patients with coronavirus disease 2019 pneumonia in Wuhan, China.
      Severe breathlessness and respiratory disease are both known to be associated with increased hospital admissions at the end of life.
      • Bone A.E.
      • Gao W.
      • Gomes B.
      • et al.
      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.
      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.
      • Costantini M.
      • Sleeman K.E.
      • Peruselli C.
      • Higginson I.J.
      Response and role of palliative care during the COVID-19 pandemic: a national telephone survey of hospices in Italy.
      ,
      • Cheng H.W.
      • Li C.W.
      • Chan K.Y.
      • Sham M.K.
      The first confirmed case of human avian influenza A(H7N9) in Hong Kong and the suspension of volunteer services: impact on palliative care.
      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 used 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.
      • Cheng H.W.
      • Li C.W.
      • Chan K.Y.
      • Sham M.K.
      The first confirmed case of human avian influenza A(H7N9) in Hong Kong and the suspension of volunteer services: impact on palliative care.
      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.
      • Matzo M.
      • Wilkinson A.
      • Lynn J.
      • Gatto M.
      • Phillips S.
      Palliative care considerations in mass casualty events with scarce resources.
      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.
      • Michaels-Strasser S.
      • Rabkin M.
      • Lahuerta M.
      • et al.
      Innovation to confront Ebola in Sierra Leone: the community-care-centre model.
      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.

      Conclusion

      Providing holistic care in a pandemic can be compromised by extreme pressure on services. Hospice and palliative care services can mitigate against this by maintaining the ability to respond rapidly and flexibly; ensuring protocols for symptom management and psychological support are available, and nonspecialists are trained in their use; being involved in triage; considering shifting resources from inpatient to community settings; considering redeploying volunteers to provide psychosocial and bereavement care; facilitating camaraderie among staff and adopting measures to deal with stress; use of technology to communicate with patients and carers; and adopting standardized data collection systems to inform operational changes and improve care. Long-term priorities should include ensuring palliative and hospice care are integrated into pandemic plans.

      Disclosures and Acknowledgments

      This research received no specific funding/grant from any funding agency in the public, commercial, or not-for-profit sectors. K. E. S. is funded by a UK National Institute for Health Research (NIHR) clinician scientist fellowship (CS-2015-15-005); I. J. H. is an NIHR senior investigator emeritus and is supported by the NIHR Applied Research Collaboration South London at King's College Hospital National Health Service Foundation Trust. I. J. H. leads the Palliative and End of Life Care theme of the NIHR Applied Research Collaboration South London and coleads the national theme in this. R. L. C. is funded by Marie Curie and Cicely Saunders International; A. E. B. is funded by Cicely Saunders International and the Dunhill Medical Trust. S. N. E., N. L., and A. E. B. are previous Cicely Saunders International PhD training fellows. The views expressed are those of the authors and not necessarily those of the National Health Service, the NIHR, the Department of Health and Social Care, or the funding charities. The authors declare no conflicts of interest.

      Supplementary Data

      Appendix

      Appendix Search Strategy

      There were no restrictions for language or publication date. Searches were completed on March 18, 2020.

      MEDLINE and Embase

      (palliative care/OR palliative medicine/OR palliate$.mp. OR hospices/OR terminally ill/OR terminal care/OR hospice$.mp. OR end of life.mp. OR EOL.mp.) AND (exp pandemics/OR pandemic$.mp. OR epidemic$.mp. OR epidemics/OR exp disease outbreaks/OR disease outbreaks.mp. OR SARS.mp. OR SARS virus/OR Severe Acute Respiratory Syndrome/OR coronavirus/OR coronavirus.mp. OR exp coronavirus infections/OR ebolavirus/OR influenza, human/OR influenza.mp. OR hemorrhagic fever, ebola/OR mers.mp. OR flu.mp. OR Middle East Respiratory Syndrome Coronavirus/OR Tuberculosis/OR Pulmonary tuberculosis/OR Tuberculosis, multi-drug resistant/OR Extensively drug resistant tuberculosis/OR TB.mp.)

      PsycINFO

      (palliative care/OR palliate$.mp. OR hospice/OR terminally ill patient/OR terminal care.mp. OR hospice$.mp. OR end of life.mp. OR EOL.mp.) AND (exp pandemics/OR pandemic$.mp. OR epidemic$.mp. OR exp epidemics/OR disease outbreaks.mp. OR SARS.mp. OR Severe Acute Respiratory Syndrome.mp. OR coronavirus.mp. OR influenza/OR swine influenza OR ebola.mp. OR ebolavirus.mp. OR influenza.mp. OR mers.mp. OR flu.mp. OR Middle East Respiratory Syndrome Coronavirus.mp. OR Tuberculosis/OR Pulmonary tuberculosis/OR multi-drug resistant tuberculosis.mp. OR extensively drug resistant tuberculosis.mp. OR TB.mp.)

      CINAHL

      Searched for the below as title, abstract, and keywords.
      (Palliative care OR palliative medicine OR palliat∗ OR hospice∗ OR terminally ill OR terminal care OR end of life OR eol) AND (pandemic∗ OR epidemic∗ OR disease outbreak OR SARS OR Severe acute respiratory syndrome OR SARS virus OR coronavirus OR coronavirus infections OR influenza OR flu OR MERS OR middle east respiratory syndrome OR ebola virus OR ebola OR Tuberculosis OR multidrug-resistant tuberculosis)

      Web of Science

      TS=((palliative care OR palliative medicine OR palliat∗ OR hospice∗ OR terminally ill OR terminal care OR eol) AND (pandemic∗ OR epidemic∗ OR disease outbreak OR SARS OR Severe acute respiratory syndrome OR SARS virus OR coronavirus OR coronavirus infections OR influenza OR flu OR MERS OR middle east respiratory syndrome OR ebola virus OR ebola OR Tuberculosis OR multidrug-resistant tuberculosis))

      References

        • Powell R.A.
        • Schwartz L.
        • Nouvet E.
        • et al.
        Palliative care in humanitarian crisis: always something to offer.
        Lancet. 2017; 389: 1498-1499
        • Downar J.
        • Seccareccia D.
        Palliating a pandemic: “all patients must be cared for”.
        J Pain Symptom Manage. 2010; 39: 291-295
        • Matzo M.
        • Wilkinson A.
        • Lynn J.
        • Gatto M.
        • Phillips S.
        Palliative care considerations in mass casualty events with scarce resources.
        Biosecur Bioterror. 2009; 7: 199-210
        • Cinti S.K.
        • Wilkerson W.
        • Holmes J.G.
        • et al.
        Pandemic influenza and acute care centres: taking care of sick patients in a nonhospital setting.
        Biosecur Bioterror. 2008; 6: 335-348
        • Costantini M.
        • Sleeman K.E.
        • Peruselli C.
        • Higginson I.J.
        Response and role of palliative care during the COVID-19 pandemic: a national telephone survey of hospices in Italy.
        Palliat Med. 2020; (in press)
        • Battista M.C.
        • Loignon C.
        • Benhadi L.
        • et al.
        Priorities, barriers, and facilitators towards international guidelines for the delivery of supportive clinical care during an ebola outbreak: a cross-sectional survey.
        Viruses. 2019; 11: 194
        • Loignon C.
        • Nouvet E.
        • Couturier F.
        • et al.
        Barriers to supportive care during the Ebola virus disease outbreak in West Africa: results of a qualitative study.
        PLoS One. 2018; 13: e0201091
        • Dhillon P.
        • McCarthy S.
        • Gibbs M.
        • Sue K.
        Palliative care conundrums in an Ebola treatment centre.
        BMJ Case Rep. 2015; 2015
        • Michaels-Strasser S.
        • Rabkin M.
        • Lahuerta M.
        • et al.
        Innovation to confront Ebola in Sierra Leone: the community-care-centre model.
        Lancet Glob Health. 2015; 3: e361-e362
        • Cheng H.W.
        • Li C.W.
        • Chan K.Y.
        • Sham M.K.
        The first confirmed case of human avian influenza A(H7N9) in Hong Kong and the suspension of volunteer services: impact on palliative care.
        J Pain Symptom Manage. 2014; 47: e5-e7
        • Leong I.Y.
        • Lee A.O.
        • Ng T.W.
        • et al.
        The challenge of providing holistic care in a viral epidemic: opportunities for palliative care.
        Palliat Med. 2004; 18: 12-18
        • Chen T.
        • Lin M.
        • Chou L.
        • Hwang S.
        Hospice utilization during the SARS outbreak in Taiwan.
        BMC Health Serv Res. 2006; 6: 94
        • Rosoff P.M.
        A central role for palliative care in an influenza pandemic.
        J Palliat Med. 2006; 9: 1051-1053
        • Gomes B.
        • Calanzani N.
        • Curiale V.
        • McCrone P.
        • Higginson I.J.
        Effectiveness and cost-effectiveness of home palliative care services for adults with advanced illness and their caregivers.
        Cochrane Database Syst Rev. 2013; : CD007760
        • Wu C.
        • Chen X.
        • Cai Y.
        • et al.
        Risk factors associated with acute respiratory distress syndrome and death in patients with coronavirus disease 2019 pneumonia in Wuhan, China.
        JAMA Intern Med. 2020; ([Epub ahead of print])https://doi.org/10.1001/jamainternmed.2020.0994
        • Bone A.E.
        • Gao W.
        • Gomes B.
        • et al.
        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.
        J Am Geriatr Soc. 2016; 64: 2210-2217