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Original Article
27 (
1
); 152-171
doi:
10.4103/ijpc.ijpc_429_20

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
Joint first authors
Licence

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Disclaimer:
This article was originally published by Wolters Kluwer - Medknow and was migrated to Scientific Scholar after the change of Publisher; therefore Scientific Scholar has no control over the quality or content of this article.

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%).

Table 1: Description of the 78 respondents
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.

Table 2: Perceived effects on staff and potential risks in the upcoming week (n=78)
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.

Table 3: Communication mechanisms in place to share information in case of COVID-19 cases (n=78)
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)
 WhatsApp 39/78 (50)
 Telephone (in the service) 29/78 (37)
 Email 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].

Table 4: Information systems available (n=78)
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%).

Table 5: Written procedures, policies, and recommendations in place (n=78)
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].

Table 6: Concerns about access to resources necessary for infection control in the service or surrounding community (n=78)
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].

Table 7: Personal protection measures available for staff working in the palliative care services (n=78)
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.

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