Preparedness and capacity of indian palliative care services to respond to the COVID-19 pandemic: An online rapid assessment survey
Correspondence Address: Source of Support: None, Conflict of Interest: None DOI: 10.4103/ijpc.ijpc_429_20
Source of Support: None, Conflict of Interest: None
Keywords: COVID-19, India, palliative care, pandemic, preparedness
The symptoms and concerns reported by patients and families affected by COVID-19 include physical symptoms (e.g., breathlessness, cough, fever, and fatigue);,, psychological symptoms associated with clinical uncertainty (e.g., fear and anxiety); and needs for spiritual, end-of-life, and bereavement care.
Palliative care is an essential health service under the Universal Health Coverage, which improves outcomes for patients and families while saving costs., World Health Assembly resolution 73.3 proposes palliative care as a core component to respond to the COVID-19 pandemic. 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. Palliative care also supports health services to conduct complex decision-making among patients with COVID-19 in resource-limited settings., However, palliative care has been largely overlooked in public health emergencies such as COVID-19., This is especially concerning in low- and middle-income countries. For example, only half of the available African governments' COVID-19 case management guidelines include palliative care.
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. Despite the recognized importance of palliative care in public health or humanitarian crises response, the existing plans rarely include palliative care.
As of December 10, 2020, 9,767,371 confirmed COVID-19 cases and 141,772 deaths were reported in India, and COVID-19 continues to spread rapidly between states., 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. 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.
According to the 2015 Quality of Death Index report, 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. Indian-specific guidelines are available for the supportive care and symptom management of severe COVID-19 cancer patients and their families. 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.
We conducted a cross-sectional online survey using methodological guidance for such survey design and implementation.,
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, and was developed using the IHR guidelines and national and international studies on palliative care preparedness in rapidly spreading epidemics., 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.
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.
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%).
Current COVID-19 situation among services
Appendices 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.
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.
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].
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%).
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].
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].
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%).
In line with the recommendations on the response and role of palliative care services in pandemics, 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, African, and the Middle-East settings. 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. 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., 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. 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.
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.
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.,,
We would like to thank the IAPC membership for supporting this survey.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
Appendix 1. Survey questionnaire
* mandatory items
Section 1: Information sheet and informed consent*
Section 2: Demographics of your service:
◻ Private ◻ Non-profit charity ◻ Government or public
◻ Within a hospital ◻ Within community
◻ Inpatient hospice ◻ Outpatient hospice ◻ Other, please specify....
* ◻ Yes ◻ No
IF YES, Number of inpatient beds: _ _
◻ Doctor or medical officer
◻ Social worker
◻ Manager or administer
◻ Other ______
Section 3: Current COVID-19 situation in your service
◻ yes, confirmed cases ◻ yes, suspect cases ◻ no ( if no, continue to Section 4)
- Who was positive (tick all that applies)?
◻ 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)
◻ yes ◻ no ◻ don't know/Not sure
◻ yes ◻ no ◻ don't know
Section 5: Measures in place to avoid contagion
◻ following the instructions ◻ spontaneously ◻ both
-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 ......................................................................
◻ Yes, we put additional ones ◻ We already had them in place before COVID-19 ◻ No, we do not have such facility
◻ Yes ◻ No ◻ NA (outpatient service only)
◻ Yes ◻ No ◻ Don't know
If YES, Please specify....
◻ following the instructions ◻ spontaneously ◻ both
◻ Yes, trained before COVID-19 pandemic ◻ Yes, trained because of COVID-19 pandemic ◻ No, not trained
- in the palliative care service ◻ Yes ◻ No ◻ N/A
- in the community ◻ Yes ◻ No ◻ N/A
◻ Yes ◻ No ◻ Dont know/Not sure
Section 6: Communication and coordination
◻ Mobile phone available 24/7
◻ Telephone (in the service)
◻ Yes ◻ No ◻ Not sure
◻ Text messages
◻ Phone call
Section 7: Resources
- in the hospice (or service) ◻ yes ◻ no ◻ don't know/not sure
- in the community ◻ yes ◻ no ◻ don't know/not sure
- 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
◻ 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?
- 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
◻ 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
Section 9: Perception of the risk
In the coming week ….
Section 10: Preparing to offer support
Optional: what are your limitations to share your expertise? ...........................................................
Optional: what could facilitate you sharing your expertise? .............................................................
[Table 1], [Table 2], [Table 3], [Table 4], [Table 5], [Table 6], [Table 7]