What is the preparedness and capacity of palliative care services in Middle-Eastern and North African countries to respond to COVID-19? A rapid survey.

CONTEXT: Evidence from prior public health emergencies demonstrates palliative care's importance to manage symptoms, make advance care plans, and improve end-of-life outcomes.
OBJECTIVE: To evaluate the preparedness and capacity of palliative care services in the Middle-East and North Africa region to respond to the COVID-19 pandemic.
METHODS: A cross-sectional online survey was undertaken, with items addressing the WHO International Health Regulations. Non-probabilistic sampling was used, and descriptive analyses were conducted.
RESULTS: Responses from 43 services in 12 countries were analysed. Half of respondents were doctors (53%), and services were predominantly hospital-based (84%). All but one services had modified at least one procedure to respond to COVID-19. Do Not Resuscitate (DNR) policies were modified by a third (30%) and unavailable for a fifth (23%). While handwashing facilities at points of entry were available (98%), a third had concerns over accessing disinfectant products (37%), soap (35%), or running water (33%). The majority had capacity to use technology to provide remote care (86%) and contact lists of patients and staff (93%), though only two-fifths had relatives' details (37%). Respondents reported high staff anxiety about becoming infected themselves (median score 8 on 1-10 scale), but only half of services had a stress management procedure (53%). Three-fifths had plans to support triaging COVID-19 patients (60%) and protocols to share (58%).
CONCLUSION: Participating services have prepared to respond to COVID-19, but their capacity to respond may be limited by lack of staff support and resources. We propose recommendations to improve service preparedness and relieve unnecessary suffering.

Key message

This study addresses an important gap in the preparedness of palliative care services in the Middle-East and North Africa region to respond to COVID-19 pandemic and other outbreaks. Our survey led to seven recommendations aiming at improving their preparedness and supporting the region's health systems in relieving unnecessary suffering.

Introduction

Elderly people and those with underlying health conditions, such as cancer, are most at risk of developing severe COVID-19 or dying.1, 2, 3 Comorbidities such as diabetes and cardiovascular disease are highly prevalent in the Middle-East, raising concerns for the progress of the pandemic in the region. In weaker health systems, there is limited capacity to care for COVID-19 patients who require intensive care units because of moderate to severe forms of the disease or complex symptoms such as breathlessness. ,

Palliative care is explicitly recognized under the human right to health, relieving the suffering of patients and families and improving their quality of life and outcomes while saving health-care costs.6, 7, 8 The World Health Assembly has called on countries to provide palliative care in the clinical management of COVID-19 patients. , This would address the emerging evidence for palliative care needs among COVID-19 patients, including physical symptoms (e.g. fever, breathlessness, fatigue, cough), , spiritual distress related to survival, and psychological distress related to prognosis uncertainty. ,

Under the 2015 International Health Regulations (IHR), countries are required to prepare response plans for public health emergencies of international concern. , However, preparedness plans routinely fail to include palliative care.16, 17, 18 The role of palliative care in pandemic responses has been demonstrated, including sharing symptom management protocols and training nonpalliative care health-care workers, supporting patients’ triage and providing psychosocial and bereavement care. The “COVID-19 tsunami of suffering” is likely to increase the need for palliative care, especially in low- and middle-income countries.

In 2012, national health systems in the Middle East region used their influenza surveillance systems to detect the MERS-CoV, and most countries have tested their preparedness plans. , 19, 20, 21, 22, 23, 24, 25 In Middle Eastern countries with fragile or limited health-care systems, the COVID-19 pandemic may cause enormous challenges to fragile health systems. ,

Palliative care in the Middle East and North African region is a relatively new development, with no country having fully integrated it within the health system. , With a Muslim majority in the region, the pandemic may have an additional religious or spiritual impact for populations.30, 31, 32, 33 A systematic review of end-of-life care in Muslim-majority countries highlighted the central role of families in the decision-making process, as well as the need for spaces to perform rituals and to address preferences for pain management. The preparedness and capacity of palliative care services to respond to COVID-19 in the MENA region is still unknown. To inform policy and appropriate and timely responses, we aimed to evaluate the preparedness and capacity to respond to COVID-19 within palliative care services of the Middle-East and North Africa region.

Method

Study Design and Settings

We developed, piloted, and conducted an exploratory cross-sectional online survey, using WHO's 2005 International Health Regulations and online survey methodological guidelines. ,

Population and Sampling

Nonprobabilistic sampling combining convenience and snowball sampling was used to recruit representatives of palliative care services in the Middle-East and North Africa region: Afghanistan, Algeria, Bahrain, Egypt, Iran, Iraq, Jordan, Kuwait, Lebanon, Libya, Morocco, Oman, Palestine, Pakistan, Qatar, Saudi Arabia, Syria, Tunisia, Turkey, United Arab Emirates, Yemen. We aimed to recruit at least one service per country and to have only one respondent per service. The services included hospices, hospital services, and home- and community-based care.

There is no comprehensive formal list, registry, or network of palliative care services for the Middle-East region. There are limited palliative care services and publicly available information on the existing official registry of palliative care services for the countries that could give a framework to draw a representative sample of services. Therefore, we identified services using publicly available information and the research team's networks as follows. We yielded 60 contacts from the Atlases of Palliative Care,37, 38, 39 International Association for Hospices and Palliative Care (IAHPC) directory, and a rapid Google and PubMed search. We yielded a further 160 contacts from our professional networks, partners of Research For Health in Conflict in the Middle-East and North Africa (r4hc-mena.org), and disseminated our survey through the World Health Organization's Eastern Mediterranean Region (WHO-EMRO) network for palliative care. Countries from WHO-EMRO located in sub-Saharan Africa were approached in a separate survey we conducted with the African Palliative Care Association.

Data Collection

The original survey questionnaire was initially designed by researchers from Italy and the UK for an early assessment of the Italian palliative care response early during the COVID-19 pandemic who shared with us the questionnaire in English. We further developed it to include existing international recommendations, especially the IHR, and evidence for generic preparedness to respond to infectious disease outbreaks or pandemics, , 23, 24, 25 , 43, 44, 45, 46, 47 and recommendations for palliative care response and roles in epidemics and pandemics. , R4HC-MENA research team members adapted the survey to the region using professional experience and key preparedness literature for the region. , , , The full questionnaire was available in English and Arabic (see Appendix I and II). It was developed in English then translated into Arabic by a bilinguistic professional translator, and the translations were reviewed by two independent experts. The translation was then tested during the pilot, where two researchers not involved in the translation completed both versions and gave feedback. No corrections were suggested.

Data were collected online using the SmartSurvey™ platform, permitting one answer per computer on the online platform, and enabled the anonymity function so IP addresses were not collected. The survey link was emailed to 190 contacts across the region, inviting them to participate (institutions providing care) and disseminate (via professional networks).

Recruitment to the online survey was opened on 05/26/20 and closed on 06/22/2020, with responses permitted until 06/26/2020. Reminders to complete the survey were sent twice during the period.

Data Analysis

Descriptive analyses were conducted following de-duplication. Quantitative data were analyzed using Stata (version 16): categorical variables described as frequencies and percentage; continuous variables as median and interquartile range (IQR). Open-ended questions were coded thematically, and the dominant themes reported.

Ethics

Ethical approval was obtained from King's College London Research Ethics Office (reference LRS-19/20–19,091). Data were collected and stored following the UK 2016 General Data Protection Regulation. Informed consent was obtained online from participants within the survey.

Findings

Respondents and COVID-19 Situation in Their Services

There were 113 engagements with the online survey (65 for the English version and 48 for the Arabic one), 69 individuals completed the survey (37 in English and 32 in Arabic) of which 67 gave consent (completion rate: 59%). The final sample was 43 (33 English and 10 Arabic) after de-duplication. Of 21 countries in the region, 12 had a least one participant (57%). We received no participation from nine countries (Afghanistan, Algeria, Iraq, Qatar, Tunisia, United Arab Emirates, Yemen) (33%). For two countries (Libya and Syria), we could not identify a contact (9%).

Table 1 describes the participants’ characteristics. Half were medical doctors (53%) and one-fifth were nurses (19%). Two in five services were public or governmental (40%) and the majority were hospital based (84%). Responding services had a median of 500 patients per year (IQR: 200–2500; 4 missing data), and 33 services reported having beds (median: 13; IQR: 8–25).

Table 1

Respondents' Characteristics (N = 43)

	n	%
Country
Turkey	14	33
Jordan	12	28
Other (Bahrain, Egypt, Iran, Kuwait, Lebanon, Morocco, Oman, Pakistan, Palestine, Saudi Arabia: 1 to 3 respondents per country)	17	40
Respondent's current role(s)
Doctor or medical officer	23	53
Nurse	8	19
Manager or responsible for the service and doctor, nurse or psychosocial professionala	5	12
Manager or responsible for the service	3	7
Psychosocial professional	3	7
Other (Operations Manager)	1	2
Type of organisation
Public	17	40
Nonprofit charity	5	12
Mixedb	4	9
Private	3	7
Missing	14	33
Type of servicec
Within hospital	36	84
Within community	13	30
Outpatient	10	23
Inpatient	7	16
Hospice/service having beds	33	77
Services which reported a case (possible, suspect or confirmed)	27	63

Doctor + Manager or responsible of the service (n = 3); Nurse + Manager or responsible of the service (n = 1); Nurse + Psychosocial professional + Manager or responsible of the service (n = 1).

Mixed: public + nonprofit (n = 2); public + private (n = 1).

Multiple choices allowed.

At the time of the survey, two-thirds of respondents had experienced a COVID-19 case within their service, with a median of five cases (IQR: 3–10.5) (see Appendix III and IV). Most cases included patients (81%) and were identified in another service within the hospital (61%).

Appendix III

COVID-19 Situation in the Responding Services (n = 26): Description of Cases

	n	%
Type of cases reported
Confirmed	14	52
Confirmed + suspected	3	11
Confirmed + suspected + probable	2	7
Confirmed + probable	1	4
Suspected	6	22
Probable	1	4
Cases reported among
Patient	8	30
Patient + relative + physician + nursea	4	15
Patient + nurse	3	11
Patient + relative	2	7
Patient + relative + nurseb	2	7
Patient + physician + nurse	2	7
Patient + physician	1	4
Physician	2	7
Nurse	2	7
Missing	1	4
Location of the cases identified
In the service	9	33
Another service of the hospital where the palliative care is located	15	56
Both in the service and another service	2	7

One respondent also specified Other: “Administrative staff”.

Two respondents also specified “Other”: “manager, coordinator”; “cleaning staff, secretary, kitchen staff”.

Appendix IV

COVID-19 Situation in the Responding Services (n = 26): Case Identification and Actions Taken by the Service

	n
Case identification
Phone call	10
Hospital dashboard/hospital HIS/infectious diseases teams	8
COVID-19 screening of patients at admission and with symptoms; and of health-care providers	3
Symptoms identified	2
Diagnosed done by service doctor	1
Department officer	1
Call for support	1
Routine examination	1
Laboratory report	1
Missing	2
Actions taken
Referral	14
Isolation/containment measures	10
Reporting	9
Communication with staff	6
Treatment	2
Protection of staff	1
Communication with users	1
Infection control involvement	1
Communication with department head	1
COVID team managed case	1
Home quarantine (for infected staff and contacts)	1
Training with staff	1
Contact tracing	1
Testing of all staff	1
Asymptomatic cases were followed up as outpatient	1
Use of smartphone app to follow-up COVID patients	1
All cancer hospital entrances were closed except for 1 inpatient and 1 outpatient entrance with triage with symptoms screening	1
All patients and caregivers to wear a mask (offered if do not have one)	1
Informed staff of SOP for COVID protection and case detection	1
Daily update and assessment meeting in the unit	1
Missing	3

Policies and Procedures

Table 2 describes the policies and procedures available or modified in response to the COVID-19 pandemic. While the vast majority reported having a written procedure for “what to do” in case of COVID-19 in the service among patients, staff, volunteers (77–88%), a third did not have or were unsure (21% and 9% respectively) to have a COVID-19 case definition (confirmed, probable, and suspect).

Table 2

Procedures (or Guidance) in Place and Policies Modified (N = 43)

	Yes	No	Unsure or Do not Know	Missing or N/A
	n (%)	n (%)	n (%)	n (%)
Case definition for confirmed, probable, and suspected COVID-19 cases	30 (70)	9 (21)	4 (9)	0 (0)
Written procedure for “what to do” in the service in case of COVID-19 case among
Patients	38 (88)	4 (9)	0 (0)	1 (2)
Health-care professional staff member	38 (88)	3 (7)	1 (2)	1 (2)
Volunteers and medical staff	35 (81)	5 (12)	2 (5)	1 (2)
Relatives and visitors	33 (77)	6 (14)	3 (7)	1 (2)
Staff and volunteers going in the community	28 (65)	7 (16)	7 (16)	1 (2)
Written procedure for “what to do” in the service in case of infectious diseases among
Patients	28 (65)	6 (14)	5 (12)	4 (9)
Relatives and visitors	24 (56)	7 (16)	7 (16)	5 (12)
Health-care professional staff member	30 (70)	4 (9)	6 (14)	3 (7)
Volunteers and medical staff	26 (60)	5 (12)	7 (16)	5 (12)
Staff and volunteers going in the community	19 (44)	8 (19)	12 (28)	4 (9)
Policies or procedures modified as a measure to avoid contagion
Operators' protection (personal protective equipment)	39 (91)	1 (2)	0 (0)	3 (7)
Visitors/relatives (number of visitors, hours, etc.)	38 (88)	0 (0)	2 (5)	3 (7)
Dead body handling	35 (81)	4 (9)	3 (7)	1 (2)
Patients' admission to the service	34 (79)	1 (2)	3 (7)	5 (12)
Volunteer support	24 (56)	6 (14)	6 (14)	7 (16)
Care of the relatives after the patient's death	19 (44)	13 (30)	7 (16)	4 (9)
Do Not Resuscitate	13 (30)	16 (37)	4 (9)	10 (23)
Procedure to support health-care providers to manage stress	23 (53)	16 (37)	4 (9)	0 (0)
Recommendations if you or someone in your household becomes ill with COVID-19 symptoms	39 (91)	3 (7)	1 (2)	0 (0)

All but one service had modified at least one of their procedures in response to the COVID-19 pandemic, especially for operators’ protection (91%) and visitors and relatives (88%). However, fewer had modified their volunteer support (56%) and Do Not Resuscitate (30%) policies, with one-quarter not having these policies in place (i.e. N/A response; 23%).

Infection Control Measures and Resources

The majority of participants reported having in place several measures to control infection and knew how to access resources in case of outbreak or lockdown (see Tables 3 and 4 ). All but one had handwashing facilities at entry points and half of those were there before COVID-19. Four in five provided additional personal protective equipment for palliative care staff (84%) and cleaners (79%) and identified an isolation room (81%). A majority had up-to-date inventories of medicines and medical supplies (86%) and personal protective equipment (81%) available. Respondents knew how to dispose of highly infectious waste in the service (84%), had materials and facilities to dispose of it (91%), and had staff trained in handling highly infectious conditions (90%), of which half were trained before COVID-19. However, one-third had concerns regarding access to essential resources for ensuring safe care: disinfectant products (37%), soap (35%), hand sanitizers (35%), running water (33%), contactless thermometers (33%), and electricity (28%). These concerns were higher for access in the surrounding community.

Table 3

Measures Taken to Avoid Contagion (N = 43)

	Additional Ones/Trained Because of COVID-19	Already Before COVID-19	None
	n (%)	n (%)	n (%)
Hand washing facility for all at points of entry	22 (51)	20 (47)	1 (2)
Personal protection equipment (PPE) for
Palliative care staff	36 (84)	6 (14)	1 (2)
Cleaning staffa	34 (79)	7 (16)	1 (2)
All health-care providers have been trained in handling highly infectious conditions such as COVID-19	16 (37)	23 (53)	4 (9)

1 missing data.

Table 4

Resources Available and Access and Knowledge (N = 43)

	Yes	No	Do not Know/Not Sure	Missing
	n (%)	n (%)	n (%)	n (%)
Adequate material and facilities to dispose of highly infectious waste
In the hospice	39 (91)	4 (9)	0	0
In the community	19 (44)	6 (14)	17 (40)	1 (2)
Up-to-date inventory of
Protection material available for staff, patient, and visitors	35 (81)	2 (5)	2 (5)	0 (0)
Medicines and other medical supplies available	37 (86)	2 (5)	2 (5)	0 (0)
Capacity to use technology instead of face-to-face appointment to provide some care remotely	37 (86)	6 (14)	—	—
Phone call	34 (92)	3 (8)	—	—
Video call	20 (54)	17 (46)	—	—
Concerns about the service/hospice's access to
Disinfectant products	16 (37)	26 (60)	—	1 (2)
Soap	15 (35)	25 (58)	—	3 (7)
Hand sanitizers (with 60% alcohol)	15 (35)	27 (63)	—	1 (2)
Running water	14 (33)	28 (65)	—	1 (2)
Thermometers (contactless, thermoflash-type)	14 (33)	28 (65)	—	1 (2)
Electricity	12 (28)	30 (70)	—	1 (2)
Having concerns about the surrounding's access to
Accessing disinfectant products to continue providing care safely	20 (47)	20 (47)	—	3 (7)
Hand sanitizers (with 60% alcohol)	19 (44)	21 (49)	—	3 (7)
Thermometers (contactless, thermoflash-type)	15 (35)	24 (56)	—	4 (9)
Soap	13 (30)	22 (51)	—	8 (19)
Running water	11 (26)	27 (63)	—	5 (12)
Electricity	9 (21)	27 (63)	—	7 (16)
Knowledge of how the hospice/service would access to the following in case of emergency, lockdown or quarantine
Food (N = 36 - for hospital-based or inpatient services only)	31 (86)	11 (26)	—	1 (4)
Medicines and other medical supply	38 (88)	5 (12)	—	0 (0)
Additional staff (e.g. if staff self-isolates or becomes ill)	37 (86)	4 (9)	—	2 (5)
Knowledge of how to dispose of to dispose of highly infectious waste
In the hospice or service	36 (84)	4 (9)	—	3 (7)
In the community	27 (63)	9 (21)	—	7 (16)
Cleaning staff included in information sharing and training regarding managing COVID-19	34 (79)	3 (7)	—	6 (14)
Having education material about COVID-19 available	36 (84)	6 (14)	—	1 (2)
Posters displayed where staff, patients, and visitors can see them (N = 36)	33 (92)	3 (8)	—	—
Education material also available for the surrounding community (N = 36)	31 (86)	1 (2)	—	1 (2)

Information Systems, Communication, and Technology

The respondents had communication channels identified for use during the pandemic (see Appendix V). Three in four had a designated focal point for collecting and sharing up-to-date information (72%). The majority would use mobile phones to receive information (77%) and phone calls to share information in case of emergency (65% with staff; 91% with patients and relatives).

Appendix V

Mechanisms in Place to Communicate and Coordinate the Response (N = 43)

	n	%
Receiving information
Institutions or person who would inform the hospice/servicea,b
Infection control team	13	30
Ministry of Health (MoH)/provincial health directorate	7	16
Head of hospital and/or department/hospital management/administration	6	14
Medical staff (doctors and/or nurses)	3	7
Laboratory/laboratory review online	2	5
Medical/professional society	1	2
Preventive medicine team	1	2
Emergency service	1	2
Do not’ know or N/A or missing	10	23
Person who would be informed in the hospice or servicea,b
Designated doctor/doctor in chief/medical director/nursing manager	8	19
Head of hospital and/or department/hospital management	7	16
Infection control team	5	12
Medical/clinical chief	4	9
Medical staff (doctors and/or nurses)	4	9
COVID-19 team	3	7
All staff	2	5
Specialist palliative care physician and consultant/consultant in charge of patient	2	5
MoH	1	2
Professor	1	2
Do not know or missing	10	23
Communication system(s) that will be used to receive information:b
Mobile phone available 24/7	33	77
WhatsApp/Viber group	21	49
Telephone (in the service)	21	49
Email	16	37
Focal point person identified in the service responsible for collecting and sharing up-to-date information
Yesc	31	72
No	7	16
Unsure	4	9
Missing	1	2
Sharing information
Any communication means in place to share COVID-19 or other urgent information	41	95
with staffb
Phone call	28	65
WhatsApp/Viber	27	63
Email	20	47
Text message	14	33
With patientsb	39	91
Text message	18	42
WhatsApp/Viber	10	23
Phone call	35	81
Email	4	9
With relatives, visitorsb	39	91
Phone call	37	86
Text message	13	30
WhatsApp/Viber	10	23
Email	2	5

Data obtained from the analysis of open-text questions.

Multiple choices allowed.

19 respondents provided details: medical staff in charge (physician/nurse) (n = 9); infection control unit (n = 3); head of department/service (n = 2); liaison officer (n = 1); hospital manager/executive (n = 1); doctors (n = 1); COVID-19 team (n = 1); administrative assistant (n = 1).

Almost all services had up-to-date lists of patients and staff (93%), and collected patients' symptoms, outcomes (95%) and treatment (98%) (see Appendix VI). Two-thirds used electronic records to collect the latter health information (81%). However, two in five services did not collect visitors' and relatives’ contact details or visit dates (37%).

Appendix VI

Information Available in the Service (N = 43)

	Paper-Based Registrya	Electronic Recorda	None	Other∗
	n (%)	n (%)	n (%)	n (%)
Up-to-date contact list of
All staff working in or for the service	20 (47)	31 (72)	2 (5)	1 (2)
All patients that attended or have attended the service	17 (40)	29 (67)	2 (5)	1 (2)
All relatives that visited or have visited the service	14 (33)	13 (30)	16 (37)	1 (2)
Patients visited in the community	13 (30)	14 (33)	16 (37)	1 (2)
System collecting information about
Patients' symptoms	21 (49)	33 (77)	0 (0)	2 (5)
Patients' outcomes	18 (42)	31 (72)	0 (0)	2 (5)
Treatment given	19 (44)	35 (81)	0 (0)	1 (2)
Dates of patients' visits or stay	19 (44)	34 (79)	1 (2)	2 (5)
Dates of relatives' visits	15 (35)	14 (33)	16 (37)	2 (5)

Multiple choices allowed.

The vast majority reported having the capacity to use technology to provide remote care (86%). Twenty-seven participants shared perceived advantages and disadvantages of using technology (see Appendix IX, Appendix VII, Appendix VIII, Appendix X, Appendix XI, Appendix XII). The key limitations were a lack of resources (e.g.,. lack of Internet coverage or devices for patients) (n = 9); trust issues from users and cooperation from patients’ family (n = 4), appropriateness issues regarding age or condition (n = 3) or a lack of body language to effectively communicate (n = 3) were the most reported. One participant was concerned about relatives hiding information from the patients. However, several advantages were also shared, such as the ability to deliver care and manage patients remotely (n = 8); and control of potential transmission (n = 6).

Appendix IX

Tables Summarizing the Qualitative Analysis of Open-text Questions: Respondents’ Biggest Worries (N = 22)

	n
Getting infected and transmitting COVID 19	11
Getting ill/nosocomial COVID	7
infecting family and patients	4
Impact of COVID on healthcare	6
Closing service due to COVID	1
Patient outcome	1
Resources drained for COVID and negative impact on other services including PC	1
Infection control	4
Asymptomatic transmission	1
Spike in cases that would overwhelm capacity/second wave/not being able to control the virus	3
Impact of COVID on society	2
The changes after pandemic	1
Related socioeconomic problems and medical problems	1
Other	1
To forget	1

Appendix VII

Tables Summarizing the Qualitative Analysis of Open-text Questions: Challenges Foreseen in the Upcoming Month (N = 30)

	n
Factors External to the Service	10
Social distancing	2
Fast community spread/community commitment to PPE	2
Second wave	2
Increased number of cases	2
Containment of the diseases	1
Psychosocial consequences of lockdown	1
Service organization	7
Reorganization of work	1
Extension of PC to COVID 19 patients/increase in patients with COVID 19 postintensive care	2
Less patient	1
Admission control	1
Inability of patients to attend the outpatient clinic	1
Limitations in home visits	0
Repeating tests	1
Staff workload and well-being	6
Manage the increased stress and anxiety	3
Inadequate staffing	1
Increased workload	1
Staff infected or quarantined	1
Quality of care (not optimum during a pandemic, delay in treatment)	3
Resources	3
Financial concern and burden (upcoming financial crises-donations)	1
Not enough sterilization equipment	1
Inadequate medicines	1
Other	2
Infection among staff/patient	1
Health system overload	1

Appendix VIII

Tables Summarizing the Qualitative Analysis of Open-text Questions: Respondents’ Views on Help Needed (N = 24)

	n
Infection control	8
Quick control of COVID-19/vaccine	2
Barrier measure and screening	2
Preventive measures/social distancing and hygiene	3
Isolation	1
Resources for service	6
Training/rapid training and orientation	2
Sufficient staff number	1
Getting tests	1
Financial help and support	2
Regulations	3
Obey instructions	1
Lockdown	1
Fines for violators	1
Team support	3
Team work/meeting	1
Psychosocial support	1
More support from service/administration	1
Individual behavior	2
Awareness raising	1
Individuals being careful	1

Appendix X

Tables Summarizing the Qualitative Analysis of Open-text Questions: Limitations to Share Expertise (N = 10)

	n
Service overload	3
Staff shortage	1
Time restraints	1
Work pressure	1
Training/awareness	2
Lack of education of HCP/lack of knowledge of PC role	1
Lack of training	1
Lack of integration of PC into oncology	1
Attitudes of HCP	1
Communication problems	1
Most of the resources and efforts directed to COVID response	1
Limit of consultation because of the use of video conferencing	1
Single center experience	1

Appendix XI

Tables Summarizing the Qualitative Analysis of Open-text Questions: Services That Could Be Provided Remotely (N = 33)

	n
Nonmedical palliative care	34
Psychological	17
Social	2
Spiritual	7
Bereavement and grief support	7
Nutrition	1
Medical care/consultations	14
Consultations/Medical support and care	5
Follow-up of patients and family	1
Pain and symptom management	6
Treatment/medication refill	2
End-of-life management	9
Managing end of life	8
Communication with family at the end of life	1
Education	3
Caregiver education	2
Teaching	1
Other	2
Communication with HCW	1
COVID-19 positive consultation/referrals	1

Appendix XII

Tables Summarizing the Qualitative Analysis of Open-text Questions: Disadvantages and Advantages of Using Technology for Providing Palliative Care (N = 27)

	n
Disadvantages of using technology
Resources	9
Internet connection/accessibility	4
Lack of technology devices for some patients/society	4
Time pressure	1
Trust and cooperation	4
Cooperation from the patients' family/relatives hiding information from patients	2
Difficult to build rapport/trust	2
Appropriateness issues	3
Difficult for elderly patients	1
Difficult for end-of-life care	1
Difficulty or lack of knowledge to use technology	1
Lack of body language when not face-to-face communication	3
Difficulty in documenting, medical evaluation or examining patient, and assessing symptoms	2
Acceptance issues	2
Adaptation	1
Acceptance from society	1
None	2
Other	3
Psychosocial issues	1
Difficulty in reaching individuals	1
Inaccuracy in some appointments and related issues in session program	1
Advantages of using technology
Remote care delivery and management	8
Medical care, pain management	2
Appointment and follow-up	2
Communication between medical care personnel and patients	2
To postpone follow-up	1
Relief and psychological support for patients to face the crisis	1
Mean to control transmission (less risky/enabled to protect ourselves/stay confined at home)	6
Communication - generic	2
Communication	1
Communication with HCP	1
Other	7
Support	2
Working well	2
Convenient, easy, practical	1
Direct contact	1
Saves time and effort	1
Missing	6

HCP = health-care provider.

Palliative Care Staff and Expertise to Support Pandemic Response

Respondents reported high anxiety among staff, especially risk to them of becoming infected (median score 8 on 1–10 scale; IQR: 7–9) and their ability to care for their relatives (median score 8 on 1–10 scale; IQR: 6–9) (see Table 5 ). However, only half of the services had a staff stress management procedure (53%).

Table 5

Perceived Effects of COVID-19 on Staff and Risks for the Service (N = 43)

	Median (IQR)
Perceived effects on staff
Anxious about getting infected themselvesa	8 (7–9)
Anxious about the need to care for their own relativesa	8 (6–9)
Anxious about the need to care for their children who may not be at schoola	8 (6–9)
Worried regarding potential issues for their interaction with the community if the service is known to manage a potential COVID-19 casea	7 (5–8)
Perception of the risks in the coming weekb
Hospice/palliative care staff are at risk of being infected by COVID-19	5.5 (4–7)
Hospice/palliative care service is at risk of closing because of an infection in the hospice or service	5 (2–7)

2 missing data.

1 missing data.

Table 6 shows that responding services have the capacity to support the broader health system to respond to COVID-19. Three in five services had plans to support other health-care settings in triaging COVID-19 patients (60%) and protocols to share for symptom management and psychological support (58%). Among the 25 respondents who could share those protocols, the majority declared they could train nonspecialists in using them (72%). About half of the services had redeployment plans for palliative care staff and resources, although 20% did not know if they had such plans. A third of the services did not have or did not know about plans to redeploy volunteers.

Table 6

Palliative Care Expertise to Support the Broader Health System (N = 43)

	Yes	No	Do not Know or N/A	Missing
	n (%)	n (%)	n (%)	n (%)
Plans to redeploy at least one of the following outside of the inpatient settings, in case of outbreak COVID-19 or another highly infectious disease
Health-care providers	21 (49)	10 (23)	8 (19)	4 (9)
Resources (material and supplies)	19 (44)	10 (23)	8 (19)	6 (14)
Volunteers	12 (28)	10 (23)	6 (14)	7 (16)
Plans to support other health-care services in the triage of patients in case of COVID-19 outbreak	26 (60)	15 (35)	- (−)	2 (5)
Palliative care protocols for symptom management and psychological support that could be shared with nonspecialist staff and/or COVID-19 response teams in other health-care facilities	25 (58)	17 (40)	- (−)	1 (2)
If yes, capacity to train nonspecialist in using these protocols (N = 25)	18 (72)	6 (24)	- (−)	1 (4)

Discussion

Our survey provides the first comprehensive assessment of the preparedness of palliative care services in the Middle-East and North African region to respond to a pandemic. Responding services have prepared to respond to COVID-19, but their capacity to respond may be limited by the lack of access to infection control basics and community-based services, especially in case of a lockdown. Lack of support to staff in managing their stress and anxiety is a major concern. This is crucial to equip them to deliver sustained care to existing non-COVID and new COVID-19 patients and their families and to fulfill their potential in supporting the wider health service during the epidemic.

In line with findings from our recent survey of African palliative care services, the respondents were aware of the communication channels to be used in case of emergency, had up-to-date lists of staff and patients that would facilitate contact tracing in case of an outbreak, and had modified policies regarding operators' protection and visits. However, among the MENA region's respondents, there was a higher proportion of services using electronic records, which would facilitate rapid contact tracing and patients' monitoring in case of an outbreak. The region has developed electronic medical records, , (particularly in hospitals) and most respondents were hospital based. However, it is important to note that our rapid survey may be biased toward most advanced services that are part of national or international networks. Further research would be needed to assess the penetration of electronic health information systems in more remote and nonhospital-based palliative care services.

In line with recommendations on the role of palliative care services in responding to epidemics, most services had protocols for symptom management and bereavement to share and were ready to support COVID-19 patients triage. This may be because two-thirds already had a COVID-19 case in the hospital they were based in or had learned from previous experience with MERS-CoV in the region. The lack of plans to redeploy staff, or resources, or of stress management procedures for staff identified threaten staff well-being and sustainability of patient care. The establishment of a regional association collecting and sharing protocols and resources in the languages of the region may help address this gap.

Regarding using technology to avoid face-to-face interactions, while the majority of services reported they had the capacity, it will be important to further investigate some of the barriers identified in the survey. The barriers reported by participants, such as lack of resources or trust issues, reflect those reported in the wider e-health implementation literature. Further research is needed to assess access and reliability of the connectivity required for e-health in MENA countries, focusing on the specificities of the regional and cultural context and related to Muslim-majority countries. Technology has advantages to reducing potential infections and solutions to reaching hard-to-reach groups need to be further explored, especially to reach out to forcibly displaced populations in a region widely affected by conflicts.

Strengths and Limitations

This rapid survey provides the first comprehensive assessment of the preparedness of palliative care services in the MENA region. We used a standardized questionnaire using international guidelines and standards adapted to the region, enabling international comparison. We have insights for 12 countries from the region with a broad geographical range. The lack of a comprehensive list of PC services in the region may have introduced a sampling bias, which may limit the generalizability of our findings, but we developed a plan to identify and include as many eligible participants as possible. It is noteworthy that the limited number of respondents per country may also demonstrate the difficulty in contacting and mobilizing palliative care services in the region in response to public health emergencies of international concern. The questions regarding the availability of medicines that we used were generic as we used the IHR. While detailed investigation into the challenges of drug availability was beyond the scope of this study, further investigation of the potential issues in accessing opioid, especially in MENA countries, is warranted. Finally, while having more than one respondent per service would have allowed capturing potentially different views from various staff, our criteria of sampling the individual responsible for the service gave a rapid assessment in an urgent context. Although we de-duplicated responses based on key characteristics, more than one participant may have responded from a single service.

Recommendations

This study provides urgently needed primary evidence to inform policy and practice in the region. Of utmost importance, we call for appropriate resources to support staff and palliative care services. We propose the following recommendations for policy and practice.

Governments and services should ensure that basic water and sanitation are available to ensure a safe provision of palliative care with implementation of infection control measures.

Governments and services should also allocate funding to equip their palliative care facilities, staff, and potentially the patients' access to devices, such as mobile smartphone.

All palliative care services need to acquire stress management protocols and offer services to support the staff. Palliative care staff well-being and views should be assessed, especially before deciding to redeploy them.

Palliative care services need to be involved in supporting and training nonspecialist health-care workers in complex questions related to the care of the dying. This is particularly relevant in light of the scarcity of resources faced by the health systems and health-care professionals, raising ethical issues and difficult discussions related to the triage and resuscitation.

We advise palliative care services in the region to develop DNR policies when absent and adapt them early before the crisis emerge. Such decisions need to be evaluated using a social justice lens and inform ethical discussions on resuscitation debates on COVID-19. , Palliative care services would need to ethically allocate their resources while maintaining dying patients' dignity, and ensure appropriate communication with caregivers.

We call on governments to integrate palliative care into the preparedness plans as recommended in the WHO publications, to prevent unnecessary suffering and foster a rapid and flexible response in case of public health emergencies. We also call on the WHO to revise the IHR to support and evaluate countries' preparedness progress and reflect the necessity of palliative care into the emergency.

Finally, we propose the development of the National Palliative Care Reference Center in the MENA region based on the model of National Reference Laboratories in the WHO-IHR. Such centers could be rapidly mobilized and foster the achievement of Universal Health Coverage. The National Palliative Care Reference Center could collect, compile, and share the most up-to-date information and protocols with other palliative care services within their countries and the region; but also train nonspecialists and less advanced or resourced palliative care providers in case of emergency, and beyond. They could be coordinated by a regional association or an existing network such as the WHO-EMRO palliative care expert network.

	Procedure Specific to COVID-19	Procedure for Infectious Diseases in General or to Another Specific Highly Infectious Disease (e.g. Influenza, Ebola, Tuberculosis, etc.)Please specify for which disease(s):
- patients	□ yes □ no □ don’t know	□ yes □ no □ don’t know
- relatives and visitors	□ yes □ no □ don’t know	□ yes □ no □ don’t know
- healthcare professional staff member	□ yes □ no □ don’t know	□ yes □ no □ don’t know
- volunteers and medical staff	□ yes □ no □ don’t know	□ yes □ no □ don’t know
- staff and volunteers going in the community	□ yes □ no □ don’t know	□ yes □ no □ don’t know
- Other, please specify:	□ yes □ no □ don’t know	□ yes □ no □ don’t know

- Policy for visitors/relatives (number of visitors, hours etc.)	□ yes □ no □ not sure □ N/A
- Policy for operator protection (personal protective equipment)	□ yes □ no □ not sure □ N/A
- Policy for patients' admission to the hospice	□ yes □ no □ not sure □ N/A
- Volunteer support policy	□ yes □ no □ not sure □ N/A
- Policy on how to handle dead patients	□ yes □ no □ not sure □ N/A
- ‘Do Not Resuscitate’ (DNR) policy	□ yes □ no □ not sure □ N/A
- Policy regarding care of the relatives after the patient's death	□ yes □ no □ not sure □ N/A
- Other policy modified, please specify:

-all staff working in or for the hospice or service (medical, administrative, cleaning staff, etc.)?	□ Yes, a paper-based registry □ Yes, an electronic record □ No □ Other:
-all patients that attended or have attended the hospice or service?	□ Yes, a paper-based registry □ Yes, an electronic record □ No □ Other:
-all relatives that visited or have visited the hospice or service?	□ Yes, a paper-based registry □ Yes, an electronic record □ No □ Other:
-patients visited in the community?	□ Yes, a paper-based registry □ Yes, an electronic record □ No □ Other:

-Patients' symptoms?	□ Yes, a paper-based registry □ Yes, an electronic record □ No □ Other:
-Patients' outcomes?	□ Yes, a paper-based registry □ Yes, an electronic record □ No □ Other:
-Treatment given?	□ Yes, a paper-based registry □ Yes, an electronic record □ No □ Other:
-Dates of patients' visits or stay?	□ Yes, a paper-based registry □ Yes, an electronic record □ No □ Other:
-Dates of relatives' visits?	□ Yes, a paper-based registry □ Yes, an electronic record □ No □ Other:

	In Your Hospice or Service?	In the Surrounding Community?
-running water?	□ yes □ no	□ yes □ no
-soap?	□ yes □ no	□ yes □ no
-hand sanitizers (with at least 60% alcohol)?	□ yes □ no	□ yes □ no
-electricity?	□ yes □ no	□ yes □ no
-thermometers (contactless, Thermoflash-type)?	□ yes □ no	□ yes □ no
-accessing disinfectant products to continue providing care safely?	□ yes □ no	□ yes □ no
-other, please specify:	□ yes □ no	□ yes □ no

□ 1 (Not at all)

□ 2

□ 3

□ 4

□ 5

□ 6

□ 7

□ 8

□ 9

□ 10 (extremely)

□ 1 (Not at all)

□ 2

□ 3

□ 4

□ 5

□ 6

□ 7

□ 8

□ 9

□ 10 (extremely)

□ 1 (Not at all)

□ 2

□ 3

□ 4

□ 5

□ 6

□ 7

□ 8

□ 9

□ 10 (extremely)

□ 1 (Not at all)

□ 2

□ 3

□ 4

□ 5

□ 6

□ 7

□ 8

□ 9

□ 10 (extremely)

□ 1 (none)

□ 2

□ 3

□ 4

□ 5

□ 6

□ 7

□ 8

□ 9

□ 10 (maximum)

□ 1 (none)

□ 2

□ 3

□ 4

□ 5

□ 6

□ 7

□ 8

□ 9

□ 10 (maximum)

-Healthcare providers	□ yes □ no □ don’t know □ N/A
-Volunteers	□ yes □ no □ don’t know □ N/A
-Resources (material and supplies)	□ yes □ no □ don’t know □ N/A