key: cord-261695-2zg3j4x8
authors: Boufkhed, Sabah; Namisango, Eve; Luyirika, Emmanuel; Sleeman, Katherine E.; Costantini, Massimo; Peruselli, Carlo; Normand, Charles; Higginson, Irene J.; Harding, Richard
title: Preparedness of African palliative care services to respond to the COVID-19 pandemic: A rapid assessment
date: 2020-09-16
journal: J Pain Symptom Manage
DOI: 10.1016/j.jpainsymman.2020.09.018
sha: 
doc_id: 261695
cord_uid: 2zg3j4x8

CONTEXT: Palliative care is an essential component of the COVID-19 pandemic response, but is overlooked in national and international preparedness plans. The preparedness and capacity of African palliative care services to respond to COVID-19 is unknown. OBJECTIVE: To evaluate the preparedness and capacity of African palliative care services to respond to the COVID-19 pandemic. METHODS: We developed, piloted and conducted a cross-sectional online survey guided by the 2005 International Health Regulations. It was emailed to the 166 African Palliative Care Association's members and partners. Descriptive analyses were conducted. RESULTS: Eighty-three participants from 21 countries completed the survey. Most services had at least one procedure for the case management of COVID-19 or another infectious disease (63%). Respondents reported concerns over accessing running water, soap and disinfectant products (43%, 42%, and 59% respectively), and security concerns for themselves or their staff (52%). Two in five services (41%) did not have any or make available additional Personal Protective Equipment. Most services (80%) reported having the capacity to use technology instead of face-to-face appointment, and half (52%) reported having palliative care protocols for symptom management and psychological support that could be shared with non-specialist staff in other healthcare settings. CONCLUSION: Our survey suggests that African palliative care services could support the wider health system’s response to the COVID-19 pandemic with greater resources such as basic infection control materials. It identified specific and systemic weaknesses impeding their preparedness to respond to outbreaks. The findings call for urgent measures to ensure staff and patient safety.

Risk factors for severe illness and mortality in COVID-19 include being elderly, the presence of 2 pre-existing health problems, and multi-morbidities. (1) (2) (3) Race and ethnicity are also associated with 3 higher incidence and poor prognosis. (4, 5) On the African continent, prevalent co-morbidities such as 4

HIV and tuberculosis pose a higher risk of mortality for patients with COVID-19. Patients with 5 moderate to severe forms of the disease and distressing symptoms such as breathlessness may 6 require intensive care, which is poorly available within weak health systems.(6) , (7) 7

Case management of COVID-19 must include palliative care to relieve suffering, improve 8 outcomes and save costs. (8, 9) This is especially true in resource-limited settings, where palliative 9 care teams are supporting complex decision-making for patients with severe COVID-19.(10) Early 10 evidence of needs among COVID-19 patients referred to palliative care include distressing physical 11 symptoms such as fever, breathlessness, fatigue, cough; (2, 11) spiritual or existential distress caused 12 by the threat to survival, and psychological distress among patients and families associated with 13 clinical uncertainty. (12) 14

Palliative care is an essential health service within Universal Health Coverage goals. However, 15 serious health-related suffering due to neglect of palliative care in global health disproportionately 16 affects African countries. (13) (14) (15) The 2005 International Health Regulations requires countries to 17 develop and implement preparedness and response plans in case of public health threats of 18 international concern(16). In a pandemic, the need for palliative care is amplified(17) but has been 19 overlooked in preparedness and response plans to public health emergencies and humanitarian 20 crises. (16, 18) This results in a failure to protect highly vulnerable populations from unnecessary 21 suffering. Prior evidence shows palliative care's key role in pandemics to integrate protocols for 22 symptom management, train non-specialists, support triage, and provide psychosocial and 23 bereavement care. (19) 24 J o u r n a l P r e -p r o o f A 2020 World Health Organization assessment of COVID-19 readiness showed moderate 25 preparedness for 62% of the 34 participating African countries.(20) As with other preparedness 26 assessments, palliative care was not included. (13) An appraisal of COVID-19 case management 27 guidelines in Africa found that only eight countries had identifiable palliative care components. (21) 28

Palliative care services are well placed to support health systems in caring for patients and families 29 facing clinical uncertainty, assist complex decision making, and avoid unnecessary suffering. 30 However, there is limited evidence of their preparedness to respond to a pandemic. This study 31 aimed to evaluate the preparedness and capacity of palliative care services in Africa to respond to 32 the COVID-19 pandemic. 

The survey questionnaire was originally designed by researchers from Italy and UK for an 46 assessment of the Italian palliative care situation early in the epidemic. (25) Of 166 palliative care services invited to participate, 122 completed the survey at least partially 78 (participation rate: 73%). We excluded 39 due to missing data, and conducted analysis on data from 79 83 respondents in 21 countries (completion rate for those invited to participate: 50%). Of these, four 80 questionnaires were completed using a Word version. None chose to participate by telephone. 81 Table 1 presents the characteristics of participating services. The majority were non-profit charity or 82 public, and half were hospital-based. These services provided care for a median of 500 patients per 83

year (IQR: 200-2500). 84

A third of services reported having at least one probable, suspected or confirmed case of COVID-19 86 with a median of 4.5 overall cases (IQR: 2-10·5). Half of cases concerned a patient, with the 87 remaining cases among patients' relatives or service staff (details in Additional file 2). 88

Respondents perceived high levels of anxiety and worry among service staff regarding the effects of 89 COVID-19 (see Table 2 ). Staff were perceived to be highly anxious about being infected 90 themselves (on a 1-10 Likert scale, median: 9, IQR: 8-10) and worried about potential issues for 91 their interaction with the community if the service is known to manage a potential COVID-19 case 92 (on a 1-10 Likert scale, median: 8, IQR: 7-10). About one-third reported a perceived increase in 93 staff absenteeism. 94 J o u r n a l P r e -p r o o f Half of respondents reported security concerns for themselves or their staff. These included socio-95 economic concerns such as loss of employment and livelihood, and fear of civil unrest related to the 96 lockdown enforcement (e.g. curfew and police involvement in enforcement and staff's exposure to 97 infection at work, in their home communities, or during their commute to work). 98 Table 3 describes the procedures and policies in place, and their modifications in relation to 100 COVID-19 case management. Three in five services had a case definition for COVID-19 (59%), 101 and at least one written procedure for COVID-19 case management or for another infectious disease 102 such as tuberculosis, HIV or Ebola. Four in five services had at least one written service procedure 103 specific to COVID-19. The majority of palliative care services had modified at least one existing 104 policy or procedure, mostly regarding visitors or relatives. 105

With respect to staff support and training, less than half of respondents reported having a procedure 106 to support healthcare providers to manage stress. One in five did not provide recommendations for 107 situations of staff member (or someone in their household) becoming ill with COVID-19. Forty-one 108 respondents gave comments on procedures for staff stress, and most of these included having a staff 109 support program available, counselling (59%) or discussions in team meetings (17%). 110

Two in five reported that not all healthcare providers have been trained in handling highly 111 infectious conditions such as COVID. Of the 51 services reporting such training, half had been 112 trained prior to the pandemic, and half in response to COVID-19. Three in five palliative care 113 services declared that cleaning staff were included in information sharing and training regarding 114 managing COVID- 19. 115 All but one service had put in place at least one measure to avoid contagion in their service. 116

Additional handwashing facilities were introduced in the vast majority of services (82%). However, 117 two in five did not have any or make available additional Personal Protective Equipment for clinical staff (41%), and cleaning staff (45%). Fifty-seven respondents provided details on the PPE 119 available, and revealed that the PPE is not always complete. They mainly reported having access to 120 masks (61%) and gloves (49%). Out of 28 services having inpatient or managing patients in hospital 121 beds, 19 reported having identified an isolation room for COVID-19 cases (68%). 122 Table 4 presents the mechanisms in place to receive information if there is a confirmed or suspected 124 case in the service or surrounding community. Respondents stated that they would receive 125 information from the local hospital or health centre, the facility or hospital, the COVID-19 task 126 team or Rapid Response team and/or the Ministry or Department of Health. The head of nursing or 127 palliative care, person in charge or project manager and/or hospital or facility management or health 128 services coordinator were identified as recipients of this information. One in four respondents 129 reported either no designated focal point identified in the service as responsible for collecting and 130

sharing up-to-date information, or being unsure of who that person is. 131

Communication reliant on mobile phones could be used to disseminate COVID-19 or other urgent 132 information with staff, patients, visitors or relatives. The most reported means to share information 133 with staff were WhatsApp/Viber (71%) and phone calls (65%); phone calls with patients (71%) and 134 relatives or visitors (76%). About one in five services reported having no communication means for 135 sharing information with patients (18%) or relatives (19%). Other means included face-to-face 136 communications, posters or noticeboards in the facility or hospital, radio or other media. 137

Respondents identified a lack of mobile phones or airtime to communicate with patients. 138 Table 5 describes the information systems available to palliative care services for contact tracing 139 and investigation. Almost all services had up-to-date lists of staff and patients, and records of 140 patients' symptoms and outcomes . Most of the information systems were paper-based. However, 141 half did not have up-to-date lists of relatives that have visited and did not record their visit dates. 142 Table 6 describes the concerns regarding access to basic resources for infection control, and 143 highlight respondents' concerns over essentials like accessing running water, soap and disinfectants 144 products for the service and the community . 145

A third of respondents reported not having, or not being sure of having, adequate material and 146 facilities to dispose of highly infectious waste within the service (respectively 28% and 8%), 147 especially in the community (61% and 15% respectively for the 46 services delivering community 148 care). Most services had up-to-date inventories of medicines and medical supplies (72%) and of 149 protective materials for staff, patients and visitors (57%). 150

Most services (80%) reported having capacity to use technology instead of face-to-face 151 appointments to provide remote care, 76% could use phone calls. Half of the services knew how to 152 access additional staff in case of emergency, lockdown or quarantine (47%); three-fifth how to 153 access medicines and other medical supplies (63%); and less than half of the 50 services providing 154 inpatient or hospital-based services knew how to access food (42%). 155

Fifty-four services had education material available (65%). Of these, most were available for the 156 surrounding community (70%) and almost all displayed posters displayed where staff, patients and 157 visitors can see them (94%). 158

Half of services reported having palliative care protocols for symptom management and 160 psychological support that could be shared with non-specialist staff in other healthcare facilities 161 (see Table 7 ). Of these 43 services, all but three had the capacity to train non-specialists in using 162 these protocols. Three in four services reported having plans to support other healthcare services in 163 the triage of patients in case of COVID-19 outbreak. Twelve respondents specified these plans, 164 which included support in screenings, advanced care planning with newly admitted hospital 165 patients, care of the dying, and beds supply due to service closure.

Half of the services (52%) reported having a plan to redeploy healthcare providers, volunteers or 167 resources outside of inpatient settings, in case of outbreak. Forty-four respondents reported 168 limitations in their ability to share expertise. They included mostly financial concerns related to the 169 lack of funding and cost of communication, as well as a lack of resources for training (including 170 human resources). 171

Palliative care services on the African continent have put in place several measures to prepare and 173 respond to COVID-19, but are limited by a lack of resources and the wider context within which 174 they operate. The participating services had adapted their policies and procedures. They reported 175 existing data collection and communication systems, and had the capacity to use technology to 176 provide care remotely, mostly relying on mobile phones which could help prevent the spread of 177 COVID-19. Those with existing symptoms management and psychosocial support protocols are 178 ready to train non-specialist in using them. The sharing of these skills is essential to meet potential 179 population-level of palliative care needs. Yet, their capacity to support the preparedness and 180 response to an outbreak has some limitations. Our study reveals high level of staff anxiety, and a 181 lack of training, material and facilities to handle highly-infectious diseases, especially in the 182 community. The findings demonstrate that the context surrounding the provision of palliative care, 183 such as concerns over security and the lack of running water and soap in the facility and 184 community, may limit the safe implementation of policies and epidemic control measures. These 185 limitations represent barriers to further supporting the national responses to COVID-19 and other 186 outbreaks. 187

The serious concerns we identified over access to water, sanitation, and hygiene, concurs with 188 existing evidence. The findings highlight the importance of palliative care services beyond hands-on care, which 210 should be integrated to strengthen the wider health system response. The common use of outcome 211 measures among African palliative care services to improve patient care may be used to enable 212 health care professionals across the health system to assess and monitor patient and family 213 symptoms and concerns. While palliative care services have expertise and protocols to build 214 capacity among colleagues across the health system, they lack the resources to deliver this crucial 215 contribution of palliative care during public health emergencies. 216

To the best of our knowledge, this study is the first to provide a comprehensive assessment of the 217 preparedness and capacity of palliative care services to respond to a pandemic in palliative care (14) The use of the SmartSurvey platform has enabled a fast and user-friendly 228 data collection while preventing multiple completion from a single computer. Although we piloted 229 the survey, the choice of coding generated missing data, and it took longer to complete than 230 estimated (median 40 minutes in practice rather than 15 minutes estimated). . The length of the 231 questionnaire may also explain why 39 respondents only completed the survey partially. We 232 excluded these records because they completed a maximum of two questions after describing their 233 COVID-19 situation (section 2 of the questionnaire out of 9). We felt that including these records 234 would carry a high number of unnecessary missing data in the sections that actually described their 235 preparedness and capacity to respond. Participation relied almost solely on internet completion, 236 even if alternative means were provided. 237

This study provides much-needed evidence on the preparedness and capacity of African palliative 238 care services to respond to COVID- 19 

Staff anxious about the need to care for their children who may not be at school 1 8 (6-9) Staff anxious about the need to care for their own relatives 1 7 (5-9)

Staff anxious about getting infected themselves 9 (8-10)

Worried regarding potential issues for your interaction with the community if your service is known to manage a potential COVID-19 case 2 8 (7-10)

Staff are at risk of being infected by COVID-19 1 7 (5-9)

Service is at risk of closing because of an infection in the service 2 5 (2-9) Staff doing screening or exchanges on social media between staff 9 11 Community and volunteers in the community 9 11

National Centre for Diseases Control / National Hygiene Institute 5 6

Local authority or committee 4 5

None reported 3 4

Other 2 3 4

Person who would be informed in the service 1 :

Head of Nursing or Palliative care, Person in charge or project manager 40 48

Hospital or Facility management or Health services coordinator 28 34 All staff / team 9 11

None reported in the facility or hospital 6 7

COVID-19 response team in the Hospital or Facility 2 2

Other 3 2 2

Missing 5 6 

J o u r n a l P r e -p r o o f 

No conflict of interest to disclose.

Ethical approval was received from the Hospice Africa Uganda Research and Ethics Committee (HAUREC 081-20).

Note: * means compulsory reply • If no, you cannot take part in the survey. <Send to Thank You page with resources > Aim of the survey: To rapidly assess the preparedness and capacity to face the COVID-19 pandemic of hospices and palliative care services in Africa.

Hospices and palliative care services provide complex care to a population considered at high-risk to develop severe to critical forms of COVID-19 . We aim to assess the level of preparedness of hospice and palliative care services in Africa in order to identify the resources and support that are needed.

The findings will inform recommendations to strengthen preparedness and potential response to the current COVID-19 and the potential re-occurence. We hope to use the data to urgently lobby for the appropriate resources within country and from external donors.

The African Palliaative Care Association (APCA) and the Cicely Saunders Institute for Palliative Care and Rehabilitation (CSI) at King's College London.

The African Palliative Care Association (APCA) is a pan-African non-profit organisation mandated with promoting and supporting culturally appropriate palliative care across Africa, through education and training, advocacy, and development of standards of care. It works collaboratively with existing and potential providers of palliative care services to help expand service provision; and work with governments and policymakers to ensure the optimum policy and regulatory framework exists for the development of palliative care across Africa (www.africanpalliativecare.org).

The Centre for Global Health Palliative Care at the CSI focuses on research and education with partners around the word to ensure that high quality appropriate palliative care can be delivered to those who need it (www.kcl.ac.uk/cicelysaunders/global-health/about-us) Data collected and confidentiality: Data are collected and stored following the UK General Data Protection Regulation. The data collected are anonymous. Only aggregated data that would not enable the identification of individuals will be shared in publications.

Data collected on this platform are collected and stored in the United Kingdom using encryption. Once the online survey will be closed, the data on this platform will be transferred to a secured encrypted server at King's College London and deleted from this platform.

If you chose to complete the survey using Word or during a phone call, the information you give will be stored at the African Palliative Care Association offices. An electronic version of the anonymised data will be shared with the team based at King's College London, where the data will be stored on a secured encrypted server. • 

Yes, please specify ..... No Don't know IF YOU ANSWERED YES TO ANY OF THE ABOVE: Did you put the measure in place following the instructions from health management or regional authorities, or did your hospice take them spontaneously?

following the instructions spontaneously both

Please share if you have additional comment: .. ................................................................................................ .......................................................................................................................... 

Predictors of mortality for patients with COVID-19 pneumonia caused by SARS-CoV-2: a prospective cohort study

Clinical features of patients infected with 2019 novel coronavirus in Wuhan, China. The lancet

Clinical characteristics of coronavirus disease 2019 in China

COVID-19 and African Americans

Is ethnicity linked to incidence or outcomes of covid-19?

Intensive care unit capacity in low-income countries: a systematic review

Clinical features of patients infected with 2019 novel coronavirus in Wuhan

Is palliative care costeffective in low-income and middle-income countries? A mixed-methods systematic review

A Systematic Review of Palliative Care Intervention Outcomes and Outcome Measures in Low-Resource Countries

Characteristics, symptom management and outcomes of 101 patients with COVID-19 referred for hospital palliative care

Pandemic palliative care: beyond ventilators and saving lives

Alleviating the access abyss in palliative care and pain relief-an imperative of universal health coverage: the Lancet Commission report

The African Palliative Care Association (APCA) Atlas of Palliative Care Development in Africa: a comparative analysis

The escalating global burden of serious health-related suffering: projections to 2060 by world regions, age groups, and health conditions. The Lancet Global Health

Palliative care in humanitarian crises: a review of the literature

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. J Pain Symptom Manage. 2020. 20. World Health Organisation. WHO African Region COVID-19 Readiness Status v2 2020

Bull World Health Organ. 2020. 22. Eysenbach G. Improving the quality of Web surveys: the Checklist for Reporting Results of Internet E-Surveys (CHERRIES)

Guide to the design and application of online questionnaire surveys

Response and role of palliative care during the COVID-19 pandemic: A national telephone survey of hospices in Italy

Clinical Management of Patients with Viral Haemorrhagic Fever: A Pocket Guide for Front-line Health Workers. Interim Emergency Guidance for Country Adaption: World Health Organization

Health system preparedness for emerging infectious diseases: A synthesis of the literature

Lessons from the Ebola Outbreak: Action Items for Emerging Infectious Disease Preparedness and Response

Pandemic influenza preparedness (PIP) framework: Progress challenges in improving influenza preparedness response capacities in the Eastern Mediterranean Region

Pandemic influenza preparedness in Africa is a profound challenge for an already distressed region: analysis of national preparedness plans. Health Policy and Planning

Pandemic influenza preparedness in the WHO African region: are we ready yet?

Strategy and technology to prevent hospitalacquired infections: Lessons from SARS, Ebola, and MERS in Asia and West Africa

Open questions on questionnaires -a bane or a bonus to research

WASH in health care facilities: global baseline report 2019. Geneva: World Health Organization and the United Nations Children's Fund

COVID-19 pandemic in west Africa

Palliative and end-of-life care in the global response to multidrug-resistant tuberculosis

Community health workers during the Ebola outbreak in Guinea, Liberia, and Sierra Leone

Ebola outbreak ending as Congolese face new 'triple threat' of COVID-19, poverty and violence ReliefWeb2020

Understanding data and information needs for palliative cancer care to inform digital health intervention development in Nigeria, Uganda and Zimbabwe: protocol for a multicountry qualitative study

Lessons learnt from implementation of the International Health Regulations: a systematic review

Integrating palliative care and symptom relief into responses to humanitarian emergencies and crises: a WHO guide. World Health Organization

We would like to thank Joan Lysias and Delphine Rahib for early comments on the survey questionnaire. 

Yes No  -Comment: ................................................................................................