Translate this page into:
Preparedness and Capacity of Indian Palliative Care Services to Respond to the COVID-19 Pandemic: An Online Rapid Assessment Survey
Address for correspondence: Dr. Sushma Bhatnagar, Department of Oncoanesthesia and Palliative Medicine, Dr. B.R.A Institute Rotary Cancer Hospital, All India Institute of Medical Sciences, New Delhi - 110 029, India. E-mail: sushmabhatnagar1@gmail.com
-
Received: ,
Accepted: ,
This is an open access journal, and articles are distributed under the terms of the Creative Commons Attribution-NonCommercial-ShareAlike 4.0 License, which allows others to remix, tweak, and build upon the work non-commercially, as long as appropriate credit is given and the new creations are licensed under the identical terms.
This article was originally published by Wolters Kluwer - Medknow and was migrated to Scientific Scholar after the change of Publisher.
Abstract
Background:
COVID-19 has been causing a high burden of suffering for patients and families. There is limited evidence on the preparedness of Indian palliative care services for the pandemic.
Aim:
This study aimed to assess the preparedness and capacity of Indian palliative care services in response to the COVID-19 pandemic.
Methods:
A cross-sectional online survey was developed based on prior evidence and international health regulations. It was emailed to the Indian Palliative Care Association members and investigators' professional networks in India. One participant per palliative care service was requested. Descriptive analysis was used.
Results:
Representatives of 78 palliative care services completed the survey. Three in four services had COVID-19 case definition and adapted their protocols for infection control (75%). About half of the services (55%) reported concerns about achieving appropriate hand hygiene in the community. More than half of the services (59%) had capacity to train nonspecialists for symptom control and psychological support. About half of the services reported that they had plans to redeploy staff (56%) and resources (53%) in the case of outbreaks. Two-fifths of the services used paper records to store an updated contact list of staff (40%) and did not have designated focal contacts for information update (40%). Staff anxiety related to personal infection risk and family care was relatively high (median score = 7 on a 1–10 scale).
Conclusion:
We recommend the following resource allocation to enable palliative care services to support the Indian health system in delivering essential care in this and future pandemics: (1) infection control, especially in the community; (2) training using existing clinical protocols to strengthen palliative care across the health system; and (3) redeployment plans.
Keywords
COVID-19
India
palliative care
pandemic
preparedness
INTRODUCTION
The symptoms and concerns reported by patients and families affected by COVID-19 include physical symptoms (e.g., breathlessness, cough, fever, and fatigue);[123] psychological symptoms associated with clinical uncertainty (e.g., fear and anxiety); and needs for spiritual, end-of-life, and bereavement care.[4]
Palliative care is an essential health service under the Universal Health Coverage, which improves outcomes for patients and families while saving costs.[56] World Health Assembly resolution 73.3 proposes palliative care as a core component to respond to the COVID-19 pandemic.[7] Evidence-based recommendations for the role of palliative care during a pandemic include patient symptom management, family bereavement care, and provision of training and support for clinical staff across the health system.[8] Palliative care also supports health services to conduct complex decision-making among patients with COVID-19 in resource-limited settings.[910] However, palliative care has been largely overlooked in public health emergencies such as COVID-19.[1112] This is especially concerning in low- and middle-income countries.[13] For example, only half of the available African governments' COVID-19 case management guidelines include palliative care.[14]
Governments are required by the WHO 2005 International Health Regulations (IHR) to develop and test preparedness and response plans in the case of public health threats of international concern.[12] Despite the recognized importance of palliative care in public health or humanitarian crises response, the existing plans rarely include palliative care.[15]
As of December 10, 2020, 9,767,371 confirmed COVID-19 cases and 141,772 deaths were reported in India,[16] and COVID-19 continues to spread rapidly between states.[1718] For example, in December 2020, Maharashtra state (central India) had the highest COVID-19-confirmed cases of 1,816,446 and 47,902 deaths. This state includes Mumbai, which is the largest city in India with more than 12 million citizens, and comprises the largest slum in Asia. However, Dadra and Nagar Haveli and Daman and Diu states (West India) had only 3352 confirmed COVID-19 cases with 2 deaths reported in the same month.[17] This pandemic has presented many challenges in India, including resource allocation, achieving optimal testing rates, population density, implementing infection control practices, and managing the health-care workforce.[19]
According to the 2015 Quality of Death Index report,[20] the capacity to provide palliative care in India is limited. Lockdown measures employed to minimize the COVID-19 transmission may have increased the palliative care needs of people with chronic and life-limiting illnesses.[21] Indian-specific guidelines are available for the supportive care and symptom management of severe COVID-19 cancer patients and their families.[22] However, preparedness and capacity within palliative care services to fulfill their essential role in the COVID-19 pandemic have not been assessed.
Our study aimed to assess the preparedness and capacity of Indian palliative care services to respond to the COVID-19 pandemic.
METHODS
Study design
We conducted a cross-sectional online survey using methodological guidance for such survey design and implementation.[2324]
Sampling and settings
We used convenience sampling to recruit representatives of palliative care services. All members of the Indian Association for Palliative Care (IAPC) (n = 1045) working at 260 palliative care centers in India and of the professional network of the investigator (NS) (n = 85) were invited to participate by email, with a request for one response per palliative care service. Those expressing interest in participating received a survey link. Doctors, nurses, social workers, and administrators from palliative care services (including hospital, home, and hospice settings) in India were eligible to participate, as they were expected to have sufficient knowledge about the preparedness of their palliative care service to manage the COVID-19 pandemic.
Data collection tool and process
The survey questionnaire development is described elsewhere[2526] and was developed using the IHR guidelines[12] and national and international studies on palliative care preparedness in rapidly spreading epidemics.[827] The survey was adapted to the Indian context by consulting local clinicians and academic experts and piloted from April 16 to 26, 2020, with 14 local palliative care providers. No necessary amendments were identified, and these responses were included into the final analysis. The questionnaire addresses: (1) description of the services (six items); (2) current COVID-19 situation in the service (seven items); (3) written procedures or guidance (four items); (4) measures in place to avoid contagion (twelve items); (5) communication and coordination (six items); (6) resources (nine items); (7) perceived effects on staff (five items); (8) perception of the risk (four items); and (9) preparedness to offer support (seven items). The majority of items were mandatory followed by open-text supplements (not mandatory). Response options were of multiple choice, multiple selection, 1–10 Likert scales, and open text. The full questionnaire is provided in Appendix 1.
The questionnaire was uploaded on the Google™ Form platform. Data collection was conducted online from April 16, to May 15, 2020. Reminders to complete the survey were sent out twice over this period.
Data management and analysis
Data were exported from the survey platform into an Excel spreadsheet and subsequently imported into statistical software IBM SPSS® (version. 26, Chicago, SPSS Inc.) for data analysis. We included all completed questionnaires for descriptive analyses. Categorical data were reported using frequency and percentage; continuous data were described by median and interquartile range (IQR). For open-ended responses, data were thematically coded.[28]
Ethics approval
This study was granted ethical approval by the Kasturba Medical College and Hospital's Ethical Committee (ref: KMC/KH IEC 286-2020). Data were collected and stored in India in line with the Indian data protection regulation.[29]
RESULTS
Participant characteristics
Of 1130 emails sent, we received 79 responses. All respondents completed the questionnaire (completion rate: 100%). We included 78 responses in the analysis after excluding a single record from a service outside India.
The majority of respondents were medical practitioners (n = 51, 65%) from services primarily located in South and North India (n = 29, 37%, and n = 24, 31%, respectively) [Table 1]. The services provided care for a median of 1000 patients per year (IQR: 400–3000). Half of the services were hospital based (n = 39, 50%) and had beds (52%), with a median of 15 beds (IQR: 6–26). They were funded by either government (n = 20, 26%) or were a nonprofit charity (n = 22, 28%).
| n (%) | |
|---|---|
| Region in India (categorized by states) | |
| South India | 29 (37) |
| North India | 24 (31) |
| West India | 17 (22) |
| East India | 8 (10) |
| Type of service categorized by funders | |
| Nonprofit charity | 22 (28) |
| Public of governmental | 20 (26) |
| Private | 15 (19) |
| Mixeda | 11 (14) |
| Missing | 10 (13) |
| Type of service categorized by settings | |
| Hospital basedb | 39 (50) |
| Nonhospital basedc | 14 (18) |
| Missing | 25 (32) |
| Services with beds | 52 (67) |
| Respondent’s current role (s) | |
| Doctor | 51 (65) |
| Doctor and manager | 12 (15) |
| Nurse | 5 (6) |
| Social worker | 5 (6) |
| Manager or responsible of the service | 3 (4) |
| Otherd | 2 (3) |
aPrivate and nonprofit charity (n=6); Public and nonprofit charity (n=4); Public, private, and nonprofit charity (n=1); Public and private (n=0), bHospital based: Within hospital (n=19), within hospital and within community (n=3), within hospital and among inpatients (n=3), within hospital, within community, and among inpatients and outpatients (n=2), within hospital, within community, among inpatients and outpatients, home care (n=2), within hospital and among outpatients (n=2), within hospital and among inpatients and outpatients (n=2), within hospital, within community, and among outpatients (n=2), within hospital and within community and home care (n=2), within hospital, within hospital and home care (n=1), within community and among inpatients (n=1), cNonhospital based: Within community (n=5), within community and among inpatients and outpatients (n=3), among inpatients and outpatients (n=2), within community and home care (n=1), within community and among outpatients (n=1), among outpatients and home care (n=1), among inpatients (n=1), dOther: Funder, chief executive officer, and counselor
Current COVID-19 situation among services
Appendix 2 and 3 describe the COVID-19 situation within services. One-third of the respondents (n = 24/78, 31%) reported confirmed or suspected COVID-19 cases. Most of these cases were among patients (n = 17/24, 71%) and had been identified by other medical divisions in the facility within which the participating palliative care service was located (n = 18, 75%) [Appendix 2]. Of the 24 services reporting cases, one-third were identified via telephone, email, or media communication between staff. For confirmed or suspected cases, most common actions were isolation of the cases (27%) and referral to COVID-specific facilities (24%). Social-distancing measures were put in place in almost half of the services following case identification (43%), including reduced care activities and quarantine [Appendix 3].
Perceived effect on staff and risk of infection
Table 2 presents perceived staff well-being and risk of infection. The respondents reported anxiety among staff, with respect to becoming infected with COVID-19 themselves (median: 7.5, IQR: 6–9), about caring for their children (median: 7, IQR: 5–8), and family care responsibilities (median: 7, IQR: 6–8). However, respondents reported only a moderate perceived risk of being infected by COVID-19 (median: 6; IQR: 4.25–8), or of the service closing (median: 6; IQR: 3–8) in the coming week.
| Median (IQR)* | |
|---|---|
| Perceived effects on work staff | |
| Staff anxious about getting infected themselves | 7.5 (6-9) |
| Staff anxious about the need to care for their own relatives | 7 (6-8) |
| Staff anxious about the need to care for their children who may not be at school | 7 (5-8) |
| Worried regarding potential issues for your interaction with the community if your service is known to manage a potential COVID-19 case | 6 (4-8) |
| Perception of the risks in the coming week | |
| Staff are at risk of being infected by COVID-19 | 6 (4.25-8) |
| Service is at risk of closing because of an infection in the service | 6 (3-8) |
*On a scale from 1 (not at all) to 10 (extremely). IQR: Interquartile range
Communication, coordination, and information systems
Table 3 presents the communication and coordination strategy to be used during the COVID-19 outbreak. The coding from open-text responses showed that those who were primarily informed about COVID-related issues were medical directors or superintendents (n = 15, 19%), frontline staff (n = 14, 18%), and/or facility managers or coordinators (n = 13, 17%). The triaging health-care staff (n = 26, 33%) or senior members of the services (e.g., heads of care team, senior officers, or service coordinators) (n = 17, 22%) were identified as those responsible for informing the service about confirmed or suspected COVID-19 patients.
| n (%) | |
|---|---|
| Institutions or person who would inform the service* | |
| Health-care staff doing screening at the front line or exchanges on social media between staff | 26 (33) |
| Head of care team, senior officer, or service coordinator | 17 (22) |
| COVID-19 task team or department of infectious disease | 9 (12) |
| Local district care team or health center | 3 (4) |
| National Centre for Disease Control/National Hygiene Institute | 3 (4) |
| Local authority, committee, or trustee | 3 (4) |
| None reported | 1 (1) |
| Missing | 16 (21) |
| Person who would be informed in the service* | |
| Medical director/superintendent | 15 (19) |
| Health-care staff/team members at the front line (e.g., physicians and nurses) | 14 (18) |
| Hospital or facility management or health service coordinator | 13 (17) |
| Head of nursing or palliative care, person in charge, or project manager | 11 (14) |
| COVID-19 response team in the hospital or facility | 9 (12) |
| Funder or trustee | 2 (3) |
| None reported in the facility or hospital | 1 (1) |
| Relatives | 1 (1) |
| No information provided | 12 (15) |
| Communication system (s) that will be used to receive information** | |
| Mobile phone available 24/7 | 59/78 (76) |
| 39/78 (50) | |
| Telephone (in the service) | 29/78 (37) |
| 26/78 (33) | |
| Othera | 3/78 (4) |
| Designated focal point person identified in the service responsible for collecting and sharing up-to-date information | |
| Yes | 34 (44) |
| No | 31 (40) |
| Unsure | 13 (17) |
*Data obtained from the analysis of open-text questions, **Multiple choices were possible, aOther: Memorandum (n=1); Telegram (n=2)
Many services used 24/7 mobile hotline (n = 59/78, 76%) or WhatsApp (n = 39/78, 50%) to receive COVID-related information. More than half of the services did not have, or were unsure whether they had a designated focal point person for collecting and sharing up-to-date information (n = 31, 40%, and n = 13, 17%, respectively) [Table 3].
The vast majority of services had up-to-date lists of staff (n = 69, 88%) and patients (n = 67, 86%), but almost half reported challenges in keeping the records of relatives' visits (n = 37, 47%) and patients in the community (n = 32, 41%). Electronic records were used by half of the services to keep the contact list of staff and patients (n = 37, 47%, and n = 33, 42%, respectively). The majority of services (≥83%) collected information regarding patients' symptoms, outcomes and treatment, and visits. This information system mostly relied on paper-based records. Around half of the services had limited information about relatives' visiting the services, with challenges in maintaining a list of contact details of relatives who visited the service (n = 37, 47%) or their visits' dates (n = 39, 50%) [Table 4].
| Paper-based registry only, n (%) | Electronic record only, n (%) | Paper and electronic record, n (%) | None, n (%) | Other*, n (%) | |
|---|---|---|---|---|---|
| Up-to-date contact list of | |||||
| All staff working in or for the service | 32 (41) | 26 (33) | 11 (14) | 7 (9) | 2 (3) |
| All patients that attended or have attended the hospice or service | 34 (44) | 22 (28) | 11 (14) | 10 (13) | 1 (1) |
| All relatives that visited or have visited the service | 26 (33) | 10 (13) | 2 (3) | 37 (47) | 3 (4) |
| Patients visited in the community | 19 (24) | 12 (15) | 4 (5) | 32 (41) | 11 (14) |
| System collecting information about | |||||
| Patients’ symptoms | 47 (60) | 15 (19) | 11 (14) | 4 (5) | 1 (1) |
| Patients’ outcomes | 42 (54) | 17 (22) | 8 (10) | 10 (13) | 1 (1) |
| Treatment given | 41 (53) | 20 (27) | 11 (14) | 5 (6) | 1 (1) |
| Dates of patients’ visits or stay | 35 (45) | 20 (26) | 13 (17) | 9 (12) | 1 (1) |
| Dates of relatives’ visits | 22 (28) | 11 (14) | 4 (5) | 39 (50) | 2 (3) |
*Other: Without further comments or detail/explanation
More than two-thirds of the participants reported that they had an up-to-date inventory of personal protection equipment, medication, and other supplies for patient care (n = 56, 72%, and n = 64, 82%, respectively).
Infection control measures in place and relevant guidance
The majority of services had a case definition for COVID-19 cases (n = 57, 73%) and a written procedure in the event of a positive case among patients (n = 61, 78%), relatives and visitors (n = 54, 69%), health-care staff (n = 61, 78%), and other staff (n = 57, 73%). Fewer (n = 34, 44%) reported that they had a written procedure for volunteers. Palliative care services had mostly adapted the existing policies or guidance to prevent or contain infection and provide bereavement care for relatives during the pandemic. Around half of the services adapted their policies and guidance both spontaneously in services and following the government instructions. Almost three-quarters of the services involved cleaning staff in COVID-related information sharing and training [Table 5]. Half of the services had a written procedure to manage staff's COVID-related stress (n = 40, 51%).
| Yes, n (%) | No, n (%) | Unsure/don’t know, n (%) | |
|---|---|---|---|
| Case definition for confirmed, probable, and suspected COVID-19 cases | 57 (73) | 10 (13) | 11 (14) |
| A written procedure for “what to do” in the case of COVID-19 case among the following | |||
| Patients | 61 (78) | 16 (21) | 1 (1) |
| Relatives and visitors | 54 (69) | 19 (24) | 5 (6) |
| Health-care professionals | 61 (78) | 15 (19) | 2 (3) |
| Volunteers | 34 (44) | 32 (41) | 12 (15) |
| Other staff | 57 (73) | 15 (19) | 6 (8) |
| Policies or procedures modified as a measure to avoid contagion | |||
| Policy for visitors/relatives (number of visitors, hours, etc.) | 65 (83) | 10 (13) | 3 (4) |
| Policy for operator protection PPE | 66 (85) | 10 (13) | 2 (3) |
| Policy for patients’ admission | 47 (60) | 24 (31) | 7 (9) |
| Volunteer support policy | 38 (49) | 27 (35) | 13 (17) |
| Policy regarding care of the relatives after the patient’s death | 40 (51) | 28 (36) | 10 (13) |
| If yes to any above, the modifications were made (n=68) | |||
| Following the government instructions | 18 (26) | - | - |
| Spontaneously | 12 (18) | - | - |
| Both | 37 (54) | - | - |
| Missing | 1 (1) | ||
| Recommendations/guidance if you or someone in your household becomes ill with COVID-19 symptoms | 61 (78) | 12 (15) | 5 (6) |
| If yes to above, were the recommendations made (n=61) | |||
| Following the government instructions | 24 (39) | - | - |
| Spontaneously | 8 (13) | - | - |
| Both | 27 (44) | - | - |
| Missing | 2 (3) | - | - |
| Cleaning staff included in information sharing and training regarding managing COVID-19 | 56 (72) | 7 (9) | 15 (19) |
| A written procedure to manage staff COVID-related stress | 40 (51) | 28 (36) | 10 (13) |
PPE: Personal protective equipment
Resources available and preparation for offering support
About one-third of the respondents expressed concerns regarding accessing infection control resources including disinfectant products (n = 25, 32%), hand sanitizers (n = 23, 29%), soap (n = 21, 27%), running water (n = 18, 23%), and electricity (n = 17, 22%). Their levels of concern were higher for access to infection control in the surrounding community [Table 6].
| Facility | Surrounding community | |||
|---|---|---|---|---|
| Yes, n (%) | No, n (%) | Yes, n (%) | No, n (%) | |
| Disinfectant products to continue providing care safely | 25 (32) | 53 (68) | 46 (59) | 32 (41) |
| Hand sanitizers (with 60% alcohol) | 23 (29) | 55 (71) | 49 (63) | 29 (37) |
| Soap | 21 (27) | 57 (73) | 35 (45) | 43 (55) |
| Running water | 18 (23) | 60 (77) | 35 (45) | 43 (55) |
| Electricity | 17 (22) | 61 (78) | 33 (42) | 45 (58) |
About one in five respondents reported that they did not have access to personal protective equipment (PPE) for use by palliative care (n = 13, 17%) or other staff (n = 16, 21%). More than 65% (n = 52) of the services could identify isolation rooms for infection control. The majority (n = 65, 83%) reported that they knew how to safely dispose of highly infectious waste within palliative care facilities, but fewer people reported knowing how to do this in the community (n = 47, 60%) [Table 7].
| yes, we have additional ones, n (%) | Not more than usual, n (%) | No, we do not have PPE, n (%) | |
|---|---|---|---|
| PPE for palliative care staff | 43 (55) | 22 (28) | 13 (17) |
| PPE for other staff | 38 (49) | 24 (31) | 16 (21) |
| Hand-washing facility for all at points of entry | 45 (58) | 23 (29) | 10 (13) |
| Yes, n (%) | No, n (%) | N/A, n (%) | |
| Isolation room identified in the case of infectious conditions like COVID-19 | 52 (67) | 9 (12) | 17 (22) |
| Knowledge of disposal of highly infectious waste in palliative care facilities | 65 (83) | 6 (8) | 7 (9) |
| Knowledge of disposal of highly infectious waste in community | 47 (60) | 20 (26) | 11 (14) |
*Data obtained from the analysis of open-text questions and one respondent might have multiple answers. PPE: Personal protective equipment, N/A: Not available
Three in five services had palliative care protocols for symptom control and psychological support that could be shared with nonspecialists during the pandemic (n = 46, 59%). Of these, the vast majority (n = 39, 85%) reported that they had the capacity to train nonspecialists in using these protocols. Barriers to share their palliative care expertise were described by 23 respondents. The main barriers were logistic, such as funding constraints on delivery of their training, lack of trained personnel, and limited infrastructure resources (e.g., access to the Internet) [Appendix 4]. More than half of the services had redeployment strategies in place for staff (n = 44, 56%) or resources (n = 41, 53%) in the case of an outbreak [Appendix 5]. This proportion was lower for the redeployment of volunteers (n = 28, 36%). Two-thirds were aware of a plan to support palliative care patient triage in other health-care settings (n = 56, 72%).
DISCUSSION
In line with the recommendations on the response and role of palliative care services in pandemics,[8] Indian palliative care services have a number of core activities prepared to respond to the COVID-19 pandemic. This include adapted protocols or guidance to protect and care for staff (e.g., providing additional PPE), patients (e.g., symptom management), and relatives (e.g., bereavement care) during the pandemic. Serious concerns over the lack of essential resources for infection control in the community were reported, which should be addressed in the preparedness plans. A communication and coordination system would help strengthen preparedness and response to an outbreak. This could include identification of a focal reporting person, communication pathway, and an up-to-date contact list of visitors and patients in the community. The majority of services had the capacity to support the broader health system by having plans for resource deployment and supporting triage of COVID-19 patients. Although the services perceived having capacity to train nonspecialists in palliative care, the sharing of expertise was sometimes impeded by logistic challenges.
The respondents reported a moderate level of psychological distress related to family care and self-care during the pandemic among staff, slightly lower but comparable to the surveys in Italian,[27] African,[25] and the Middle-East settings.[26] However, only half of the services had stress management procedures, which may impact the capacity to respond to a recurrence and continue providing care efficiently. With respect to palliative care staff's well-being, it should also be noted that the pandemic has been associated with excess non-COVID deaths.[30] Therefore, the additional workload and the associated stress may affect palliative care staff. It is thus vital to provide extra support and protection specifically to the people working clinically with COVID-19 patients.[431] Limited contact information about relatives and other visitors identified in this survey may also create anxiety and hamper infection control measures.
The Indian policy of national lockdown and quarantine measures may have increased the need for community-based palliative care due to travel restrictions and fewer hospital admissions.[19] However, this restriction requires investment in adequate provision of water, sanitation, and infectious waste disposal in the community.
To the best of our knowledge, this is the first study to investigate the preparedness of palliative care services to respond to the COVID-19 pandemic in India. We used online survey method guidance to design and report the survey, which was developed from prior published similar research adapted to the Indian context. The number of participants' responses is reasonable given the time commitment for participation by services who are likely under additional pressures during COVID-19 pandemic. Despite this limitation, the data provide important information to guide further study and service planning. The use of mandatory questions for the majority of the questionnaire resulted in a 100% completion rate (although this may also have reduced response rate). However, the nature of the sampling available to the researchers meant that we could only contact individual IAPC members and not palliative care services. Therefore, some services may be represented more than once despite our data-cleaning and management procedures to de-duplicate. The web-based data collection method may have biased the sample toward those with a reliable internet connection.
Recommendations
We recommend the following for Indian palliative care services to prepare for the current and future public health emergencies: (1) improve access to essential resources including water, soap, and PPE for infection control in the community; (2) provide training using the existing clinical protocols to strengthen palliative care across the health system; (3) develop deployment plans (e.g., infection control resource deployment, staff stress management, and logistic support) to widen access to palliative care.
CONCLUSION
This study provides important data and insights into the preparedness and capacity of Indian palliative care services to respond to COVID-19 that can inform the preparedness and response to the current and future public health emergencies. Palliative care should be sustainably integrated into the wider health-care system to reach Universal Health Coverage and to support India's preparedness plans for palliative care provision.[111532]
Financial support and sponsorship
Nil.
Conflicts of interest
There are no conflicts of interest.
Acknowledgments
We would like to thank the IAPC membership for supporting this survey.
REFERENCES
- Managing the supportive care needs of those affected by COVID-19. Eur Respir J. 2020;55:2000815.
- [Google Scholar]
- Clinical features of patients infected with 2019 novel coronavirus in Wuhan, China. Lancet. 2020;395:497-506.
- [Google Scholar]
- Characteristics, symptom management, and outcomes of 101 patients with COVID-19 referred for hospital palliative care. J Pain Symptom Manage. 2020;60:e77-81.
- [Google Scholar]
- Bereavement support on the frontline of COVID-19: Recommendations for hospital clinicians. J Pain Symptom Manage. 2020;60:e81-6.
- [Google Scholar]
- Is palliative care cost-effective in low-income and middle-income countries. A mixed-methods systematic review? BMJ Support Palliat Care. 2019;9:120-9.
- [Google Scholar]
- A systematic review of palliative care intervention outcomes and outcome measures in low-resource countries. J Pain Symptom Manage. 2018;55:1382-97.
- [Google Scholar]
- Seventy-Third World Health Assembly 73.3: COVID-19 Response. In: Geneva, Switzerland: World Health Organization;. Geneva, Switzerland: World Health Organization; 2020.
- [Google Scholar]
- 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;60:e31-40.
- [Google Scholar]
- Clinical Management of COVID-19. Geneva, Switzerland: World Health Organisation; 2020. Interim Guidance, 27 May 2020
- [Google Scholar]
- The importance of addressing advance care planning and decisions about do-not-resuscitate orders during novel coronavirus 2019 (COVID-19) JAMA. 2020;323:1771-2.
- [Google Scholar]
- Palliative care in humanitarian crises: A review of the literature. J Int Humanitarian Action. 2018;3:5.
- [Google Scholar]
- IHR Monitoring and Evaluation Framework. International Health Regulations (2005) 2018
- [Google Scholar]
- Do the clinical management guidelines for Covid-19 in African countries reflect the African quality palliative care standards. A rapid review? Bull World Health Organ 2020
- [Google Scholar]
- India: WHO Coronavirus Disease (COVID-19) Dashboard; Available from: https://covid19.who.int/region/searo/country/in
- National Informatics Centre. COVID-19 Statewise Status. Available from: https://www.mohfw.gov.in/
- [Google Scholar]
- Statistics and Research Coronavirus (COVID-19) Cases. Available from: https://ourworldindataorg/covid-casescountry=GBR ~ IND ~ USA
- [Google Scholar]
- The Economist Intelligence Unit. In: The 2015 Quality of Death Index Ranking Palliative Care Across the World. Singapore: LIEN Foundation; 2015.
- [Google Scholar]
- Palliative care for advanced cancer patients in the COVID-19 pandemic: Challenges and adaptations. Cancer Res Stat Treat. 2020;3:127-32.
- [Google Scholar]
- Symptom management and supportive care of serious COVID-19 patients and their families in India. Indian J Crit Care Med. 2020;24:435-44.
- [Google Scholar]
- Guide to the design and application of online questionnaire surveys. Nepal J Epidemiol. 2016;6:640-4.
- [Google Scholar]
- Improving the quality of web surveys: The checklist for reporting results of internet e-surveys (CHERRIES) J Med Internet Res. 2004;6:e34.
- [Google Scholar]
- Preparedness of African palliative care services to respond to the COVID-19 pandemic: A rapid assessment. J Pain Symptom Manage. 2020;60:e10-26.
- [Google Scholar]
- 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? J Pain Symptom Manage. 2021;61:e13-e50.
- [Google Scholar]
- Response and role of palliative care during the COVID-19 pandemic: A national telephone survey of hospices in Italy. Palliat Med. 2020;34:889-95.
- [Google Scholar]
- Content analysis and thematic analysis: Implications for conducting a qualitative descriptive study. Nurs Health Sci. 2013;15:398-405.
- [Google Scholar]
- National Ethical Guidelines for Biomedical and Health Research Involving Human Participants. New Delhi, India: Indian Council of Medical Research; 2017.
- [Google Scholar]
- Weekly Estimates of Expected Deaths and Excess Non-COVID-19 Deaths during the Pandemic in England and Wales. London, UK: Imperial College London; 2020.
- [Google Scholar]
- UNICEF, WHO, and IFRC. In: Social Stigma Associated with the Coronavirus Disease (COVID-19). Geneva, Switzerland: UNICEF; 2020.
- [Google Scholar]
- Alleviating the access abyss in palliative care and pain relief-an imperative of universal health coverage: The lancet commission report. Lancet. 2018;391:1391-454.
- [Google Scholar]
Appendix 1. Survey questionnaire
* mandatory items
Section 1: Information sheet and informed consent* Section 2: Demographics of your service:
Where is your service located (Mention the name of the city and state)?* The approximate number of patients seen per year* Type of hospice and/or service (tick all that applies):* ◻ Private ◻ Non-profit charity ◻ Government or public ◻ Within a hospital ◻ Within community ◻ Inpatient hospice ◻ Outpatient hospice ◻ Other, please specify.... Do you have inpatient beds (applies both to hospital-based and hospice-based palliative care services)* ◻ Yes ◻ No IF YES, Number of inpatient beds: _ _ What is your current role (tick all that applies):*
◻ Doctor or medical officer ◻ Nurse ◻ Social worker ◻ Manager or administer ◻ Other ______
Section 3: Current COVID-19 situation in your service
Did you have any suspected or confirmed cases of COVID-19 in your palliative care service or the hospital that your palliative care service is based?* ◻ yes, confirmed cases ◻ yes, suspect cases ◻ no ( if no, continue to Section 4)
IF YES: - Who was positive (tick all that applies)? ◻ patients ◻ family ◻ nurses ◻ doctors ◻ volunteers ◻ other staff ◻ others (specify) .... - If yes, where were the cases identified? ◻ your palliative care service ◻ hospital that your palliative care is based - If yes, how many cases do you have (specify numbers for suspected, probable, confirmed)? ….. - How were they identified (e.g. who informed you, which communication means (phone, email, etc.)? ..... - What was done (e.g. reporting, referral, containment measures, protection of and communication with staff and users, etc.)? ..... - What were the consequences (e.g. for your service, yourself, your interaction with the community, etc.)? .....
Section 4: Written response procedures (or Guidance)
Do you have a case definition for confirmed, probable and suspected COVID-19 cases?* ◻ yes ◻ no ◻ don't know/Not sure Do you have a written procedure for “what to do” if you have a confirmed, robable and/or suspected COVID-19 case in your service among:*
| Procedure specific to COVID-19 | |
| patients | □ yes □ no □ don’t know |
| relatives and visitors | □ yes □ no □ don’t know |
| healthcare professionals | □ yes □ no □ don’t know |
| volunteers | □ yes □ no □ don’t know |
| Other staff | □ yes □ no □ don’t know |
| Other please specify......... | □ yes □ no □ don’t know |
Do you have a procedure to support healthcare providers to manage stress associated with the presence of/exposure to COVID-19 patients?* ◻ yes ◻ no ◻ don't know Any comment or additional thoughts on policies and protocols for COVID-19 patients in your service…
Section 5: Measures in place to avoid contagion
Did you modify any of the following policies or procedures as a measure to avoid contagion?*
| 1 Policy for visitors / relatives (number of visitors, hours etc.) | □ yes □ no □ not sure |
| 2 Policy for operator protection (Personal Protective Equipment) | □ yes □ no □ not sure |
| 3 Policy for patients’ admission to the hospice | □ yes □ no □ not sure |
| 4 Volunteer support policy | □ yes □ no □ not sure |
| 5 Policy regarding care of the relatives after the patient’s death | □ yes □ no □ not sure |
| 6 Other policy modified, please specify | ..... |
If you answered yes to any of the above: Did you change the policies following the instructions from health management or regional authorities, or did your hospice take them spontaneously? ◻ following the instructions ◻ spontaneously ◻ both Personal Protection Equipment (PPE) for:* -palliative care staff: ◻ Yes, we put additional ones ◻ Not more than usual ◻ No, we do not have PPE -other staff: ◻ Yes, we put additional ones ◻ Not more than usual ◻ No, we do not have PPE Please specify which PPE are available ...................................................................... Do you have in place any of the following measures to protect staff and patients: Hand washing facility for all at points of entry (soap and running water or hand sanitizers with 60% alcohol)* ◻ Yes, we put additional ones ◻ We already had them in place before COVID-19 ◻ No, we do not have such facility Isolation room identified in case of infectious conditions, like COVID-19:* ◻ Yes ◻ No ◻ NA (outpatient service only) Do you have guidance or protocol if you or someone in your household becomes ill with COVID-19 symptoms* ◻ Yes ◻ No ◻ Don't know If YES, Please specify.... IF YOU ANSWERED YES TO ANY OF THE ABOVE: Did you change the policies following the instructions from health management or regional authorities, or did your palliative care service initiate them spontaneously? ◻ following the instructions ◻ spontaneously ◻ both Have all healthcare providers been trained in handling highly infectious conditions such as COVID-19?* ◻ Yes, trained before COVID-19 pandemic ◻ Yes, trained because of COVID-19 pandemic ◻ No, not trained Do you know how to dispose of highly infectious waste?* - in the palliative care service ◻ Yes ◻ No ◻ N/A - in the community ◻ Yes ◻ No ◻ N/A Was the cleaning staff included in information sharing and training regarding managing COVID-19?* ◻ Yes ◻ No ◻ Dont know/Not sure
Section 6: Communication and coordination
How would you be informed if there is a confirmed or suspected case in your palliative care service?* Who will advise you? Who will be notified (position or job title)?* What communication system will be used for notification? (Tick all that applies)*
◻ Mobile phone available 24/7 ◻ Telephone (in the service) ◻ Email ◻ WhatsApp ◻ Other..... Is there a focal point person identified in the palliative care service for collecting and sharing up-to-date information (about health recommendations, cases, protocols to use):* ◻ Yes ◻ No ◻ Not sure What communication means are in place to share COVID-19 or other urgent information with the below mentioned persons (Tick all that applies):*
◻ Text messages ◻ WhatsApp ◻ Phone call ◻ Email ◻ Other..... Do you have an up-to-date contact list of:*
| - 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. |
Do you have a system for collecting information about the below mentioned details:*
| - 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. |
Section 7: Resources
Do you have concerns about access to*
| in your palliative care service? | in the surrounding community? | |
| running water | □ yes □ no | □ yes □ no |
| soap | □ yes □ no | □ yes □ no |
| hand sanitizers (with 60% alcohol) | □ yes □ no | □ yes □ no |
| electricity | □ yes □ no | □ yes □ no |
| accessing disinfectant products to continue providing care safely | □ yes □ no | □ yes □ no |
| Other, please specify… | □ yes □ no | □ yes □ no |
Do you have adequate material and facilities to dispose of highly infectious waste?* - in the hospice (or service) ◻ yes ◻ no ◻ don't know/not sure - in the community ◻ yes ◻ no ◻ don't know/not sure Do you have an up-to-date inventory of:* - protection material available for staff, patient and visitors (hygiene and sanitation materials, protection material like masks, etc.) ◻ yes ◻ no ◻ not sure - medicines and other medical supplies available to care for the patients? ◻ yes ◻ no ◻ not sure Do you have the capacity to use technology instead of face-to-face appointment to provide some care remotely? ◻ phone call ◻ video call ◻ other IF YES, please specify: - which service can be provided remotely (e.g. psychological support, spiritual care, grief and bereavement, managing the end of life phase, etc.): IF NOT, please specify: - what are your limitations to use technology? ........................................................ - what would facilitate your use of technology? ................................................... In case of emergency, lockdown or quarantine, do you know how your palliative care service would have access to (e.g. Local/national authorities' stocks, private supplier, transportation, etc.):* - food (for inpatient services only) ◻ yes ◻ no - medicines and other medical supply ◻ yes ◻ no - additional staff (e.g. if staff self-isolates or becomes ill) ◻ yes ◻ no Do you have education material about COVID-19 available?* ◻ Are there posters displayed where staff, patients and visitors can see them? ◻ Are they also available for the surrounding community?
Section 8: Effect on staff
Do you observe that some staff suddenly did not come to work without justification?* ◻ yes ◻ no ◻ not sure In your opinion, how anxious are your staff about the need to care for their children who may not be at school?* From 1 to 10 (1 – not at all anxious; 10-extremely anxious) In your opinion, how anxious are your staff about the need to care for their own relatives?* From 1 to 10 (1 – not at all anxious; 10-extremely anxious) In your opinion, how anxious are your staff about getting infected themselves?* From 1 to 10 (1 – not at all anxious; 10-extremely anxious) How worried are you regarding potential issues for your interaction with the community if your hospice or service is known to manage a potential COVID-19 case?* From 1 to 10 (1 – not at all anxious/worried; 10-extremely anxious/worried)
Section 9: Perception of the risk
In the coming week ….
How much do you think hospice/palliative care staff are at risk of being infected by COVID-19?* From 0-10 (0 no risk - 10 maximum risk you can imagine) How much do you think the hospice/palliative care service is at risk of closing because of an infection in the hospice or service?* From 0-10 (0 no risk - 10 maximum risk you can imagine) Do you have any security concerns for yourself or your staff?* ◻ yes ◻ no IF YES, please specif....
Section 10: Preparing to offer support
Do you have palliative care protocols for symptom management and psychological support that could be shared with non-specialist staff and/or COVID-19 response teams in other healthcare facilities:* ◻ yes ◻ no IF YES, do you have the capacity to train non-specialist in using these protocols: ◻ yes ◻ no Optional: what are your limitations to share your expertise? ........................................................... Optional: what could facilitate you sharing your expertise? ............................................................. In case of outbreak COVID-19 or another highly infectious disease, do you have plans to redeploy the following in outside of the inpatient wards: staff and resources outside of the inpatient settings?*
| Healthcare providers | □ yes □ no □ don’t know |
| Volunteers | □ yes □ no □ don’t know |
| Resources (material and supplies) | □ yes □ no □ don’t know |
Do you have plans to support other healthcare services in the triage of patients in case of COVID-19 outbreak?* ◻ Yes ◻ No Additional comments: Do you think there are relevant information we have omitted to ask you? What are your biggest worries or concerns?
| n | % | |
|---|---|---|
| Type of cases reported:* | ||
| Confirmed | 17 | 71 |
| Suspected | 7 | 29 |
| Probable | 0 | 0 |
| Cases reported among* | ||
| Patient | 7 | 29 |
| Patient, Nurse and Other staff | 3 | 13 |
| Patient and Relative | 2 | 8 |
| Patient and Nurse | 2 | 8 |
| Relative | 1 | 4 |
| Nurse | 1 | 4 |
| Physician | 1 | 4 |
| Patient, Physician, Nurse and Other staff | 1 | 4 |
| Patient, Relative, Physician and Nurse | 1 | 4 |
| Patient, Relative, Physician and Other staff | 1 | 4 |
| Other staff | 1 | 4 |
| Missing | 3 | 13 |
| Location of the cases identified: | ||
| Another care services/divisions in the hospital where the palliative care is located | 18 | 75 |
| In the palliative care service | 2 | 8 |
| Missing (not specified) | 4 | 17 |
* Multiple selection was allowed
| n | % | |
|---|---|---|
| Ways of cases identification | 24 | |
| Telephone, email or social media communication between staff | 8 | 33 |
| Staff communication within or between services/local authorities | 6 | 25 |
| Clinical features of suspect cases | 6 | 25 |
| Test result of the suspect cases | 2 | 8 |
| Self-referral to services for testing | 1 | 4 |
| Regular outpatient clinic visits and assessment | 1 | 4 |
| Actions done | 55 | |
| Isolating the confirmed cases and quarantining the suspected cases | 15 | 27 |
| Referring the cases to COVID-specific facilities/services for testing or treatment | 13 | 24 |
| Reporting to relevant local authorities, head of department of managers | 9 | 16 |
| Staff wore PPE while providing care | 6 | 11 |
| Communicating with staff and users | 4 | 7 |
| Testing again the suspect cases to confirm | 3 | 5 |
| Contact tracing | 3 | 5 |
| Triage the suspect cases for testing, treatment or isolation | 1 | 2 |
| Referring dying patient to palliative care team | 1 | 2 |
| Consequences | 23 | |
| Restricted and reduced care activities, quarantine and social distancing measure in place | 10 | 43 |
| No specific consequences | 3 | 13 |
| Staff were alert due to worries regarding infection of staff and patients | 2 | 9 |
| Staff psychological distress (e.g. scared, worried, and retreated interaction) | 2 | 9 |
| Test results found negative | 2 | 9 |
| Suspected cases refused referral and went home for quarantine | 1 | 4 |
| Cases were cured | 1 | 4 |
| The services continue to offer care to patients and family members | 1 | 4 |
| Developing protocol to prepare for the future | 1 | 4 |
*This was an optional question. Data were obtained from the analysis of open text questions and one respondent might have multiple answers
| Yes n (%) | No n (%) | Missing n (%) | |
|---|---|---|---|
| Protocol for symptom management and psychological support | 46 (59) | 32(41) | 0 (0) |
| If yes, capacity to offer training for others (n=46) | 39(85) | 6(13) | 1 (2) |
| Barriers to share expertise (n=23)* | n | ||
| Logistic: lack of funding, protocol, training, staff and resources | 10 | ||
| Not feasible for inadequate service provision | 3 | ||
| Busy clinical routine schedule | 3 | ||
| Refused by the trainee due to trainers’ COVID-19 caring responsibilities | 2 | ||
| Staff motivation and willingness to learn | 1 | ||
| Hierarchy in the facilities | 1 | ||
| Lockdown regulation due to COVID-19 | 1 | ||
| Lack of awareness | 1 | ||
| Rapidly changed COVID-19 related regulation | 1 | ||
* Data obtained from the analysis of open text questions
| Yes n(%) | No n(%) | Don’t know n(%) | |
|---|---|---|---|
| Plan for resources redeployment | |||
| Healthcare providers | 44 (56) | 10 (13) | 24 (31) |
| Resources (material and supplies) | 41 (53) | 13 (17) | 24 (31) |
| Volunteers | 28 (36) | 16 (21) | 34 (44) |
| Plan to support other services in triage of palliative care patients | 56 (72) | 22(28) | - |
