Running palliative care services at the institute of palliative medicine, kozhikode, amid COVID-19 pandemic: A strengths, weaknesses, opportunities, and threats analysis
Keywords: Community participation, COVID-19, pandemic, recording and reporting, strengths, weaknesses, opportunities and threats analysis
The first case of COVID-19 in India was confirmed on January 30, 2020, in Kerala. Today, as on May 12, 2020, there are more than 70,000 positive cases across the country. None of us were prepared to handle this pandemic, it took us all by surprise. Similarly, the nationwide lockdown, which started on March 24, 2020, shook the health-care system of the country. Patients were not able to access the health-care facilities, supply chains for drugs and medical equipment were disrupted, hospitals ran short of personal protective equipment (PPE) due to increased demand caused by the pandemic and decreased supply caused by the lockdown, and to add to all these, several health care workers were infected. Hence, hospitals running with limited human and material resources were forced to scale down their services. In all these, the most affected were patients who require continual care such as dialysis, chemotherapy, blood transfusions, antenatal care, and geriatric care and those suffering from chronic ailments. As many health-care facilities are prioritizing their services, it is natural or one may even consider it “fair” to divert the limited resources to disciplines that has better outcomes in terms of recovery from illness and better survival. In a country where <3% have access to palliative care (PC) before the constraint caused by the pandemic, one need not think hard to understand the pain and suffering of the patients with conditions requiring PC during this time of crisis.
The focus of this paper is to perform a Strengths, Weaknesses, Opportunities, and Threats (SWOT) analysis of the PC services provided by the Institute of Palliative Medicine (IPM), Kozhikode, amid COVID-19 pandemic and to summarize its findings. We hope that the summary of our findings would be helpful to the existing PC facilities so that they can continue to care for their patients and alleviate their sufferings amid this pandemic.
Background of the services provided in the institute of palliative medicine
Our organization has been providing PC services since 1993. We have outpatient care (OP), home-based care (HC), and inpatient care (IP) with 30 beds offering terminal care, symptom care, and respite care. The IP facility is manned by doctors and nurses 24 × 7. The average bed occupancy rate in the IP wing is 50%–70%. On an average 40 patients attend the OP unit each day for registration, doctor's consultation, follow-up, medicine refill and for counseling sessions. In addition, procedures such as administration of parenteral medications, wound care, urinary catheterization, per rectal examination/evacuation/enema, abdominal paracentesis, pleural tapping and colostomy care are carried out in the OP unit. HC services are provided 6 days a week. Two doctor led HC teams and 10 nurse led homecare teams conduct homecare visits in a week. All the services are provided free of charge. The organization receives its funding through microdonations made by the local community. Our volunteers including the student volunteers help in fund mobilization.
Major changes in the services following COVID-19 pandemic
A SWOT analysis of PC services provided by IPM amid COVID-19 pandemic was performed. The data for the analysis was gathered through brainstorming by the members of PC team. In addition to brainstorming, daily reports and registers were reviewed. Changes made in the service delivery during the pandemic were identified. Strengths and weaknesses that are inherent to the system were identified and summarized. Opportunities and threats that are external to the system but can affect the service were discussed. The results are summarized below [Table 1].
Good prioritization and documentation system
The daily HC provided by the organization is planned and scheduled based on patients' needs and priorities. This planned approach enabled the nurses to have a priority list for each day to make phone calls and inquire about the current health status of the patients. The organization was not required to make a new priority list when regular HC visits were deferred. Telephonic consultation and emergency home visits were initiated the same day the regular HC visits were stopped. Similar to HC priority list, a patient Follow-up Visit Register is maintained at the OP. When a patient misses a follow-up visit at OP, they are immediately called through phone and the reason for missed visit is inquired and follow-up action is documented in the patients' dropout register. Since these systems are already in place, the nurses are already familiar with telephonic inquiry and patients also are not lost to follow-up. To maintain this system efficiently, the contact number of not only the patient but two of the carers is also documented and updated in the case sheet.
Infection control practices followed routinely in IPM
The infection control practices are often re-enforced and strictly followed at the institution. Standard precautions are followed by the nurses while performing procedures. Handwash practices, use of alcohol-based hand sanitizer, daily preparation of 1% sodium hypochlorite solution, autoclaving and wet mopping of IP unit and OP unit are incorporated into routine care. Since these systems are already in place, training the health-care workers in taking droplet precaution was easily achieved and they were also able to quickly adopt them. Till date, none of our health workers have contracted COVID-19 infection.
Already established 24 × 7 emergency homecare services
IPM in association with nearby link centers in Kozhikode has been running 24 × 7 emergency HC services since 2010. All the patients registered with IPM and nearby link centers are provided with an emergency contact number through which they can have their emergency issues addressed. Hence, when the regular HC visits were discontinued, patients and their families did not have any difficulty in reaching us when they needed us. This already established system enabled the organization to transition smoothly during the pandemic to provide telephonic consultation and emergency HC visits.
Closely working with government medical college hospital
Working closely with government institutions has its advantages and disadvantages. Although IPM is a community-based organization solely run by community participation and ownership, it has a symbiotic relationship with the GMCH, Kozhikode. The organization has been running its Outpatient PC clinic in a space provided by the hospital administration since 1993. The hospital administration supports the clinic by providing medicines, and other consumables such as masks, gloves, and alcohol-based hand sanitizers. In addition to this, the organization is also able to access the services provided by the central sterile supplies department of the hospital to daily receive dressing packs and procedure trays that are autoclaved. The biomedical waste generated are also disposed through the biomedical waste management system established by the GMCH.
Lack of funding
Since all the services are provided free of charge, the organization does not generate any income through patient care. It is solely dependent on donations provided by the community. The nationwide lockdown to contain the pandemic and the subsequent economic fallout has affected the generous donation given by the community. This has affected our financial status very badly.
Not having our own out-patient building
The organization does not have its own infrastructure for OP unit. Hence, when the hospital needed space to triage patients to manage COVID-19 pandemic, we had to shift our OP unit to another place.
Interrupted supply of personal protective equipment
One reason for stopping regular HC services is the interrupted supply of adequate number of PPE. Since our human resources are also limited, we had only enough number PPE to continue to run OP unit and provide emergency HC visits. Continuing regular HC services meant sending the healthcare workers to the field without adequate PPE, there by risking them and our patients. Hence regular HC visits were deferred.
Well-developed communication channels
In a place like Kozhikode, Kerala, almost everyone has a phone if not a smart phone. The network coverage is also fairly good to facilitate telephonic communication. Wide usage of communication platforms such as WhatsApp video calling has enabled people to stay connected amid nationwide lockdown. The availability of these communication channels has enabled us to provide telephonic consultation and wherever required, video call consultations. Informally, we have received feedback from the patients and families that they are satisfied with the telephonic enquiry and consultations. Telephonic consultation and video calling are not a perfect platform nor are they going to be a permanent solution for the current crisis, but these platforms are a great opportunity to ensure that the patients who suffer from life limiting conditions are followed up and their sufferings are alleviated as much as possible.
Active community participation and co-operation of patients' families
IPM is a World Health Organization Collaborating Center for community participation in PC. There is active participation by the community volunteers and families of the patients to generate funds for the patient care and other activities. The community volunteers in Kerala have a history of establishing good rapport with patients and their families. Even before the lock down, volunteers have been maintaining constant contact with the patients and they are the first to identify the needs of the patients and families. These volunteers who are already trained in communication and basic infection control practices can be utilized to make HC visits to provide emotional, social, and spiritual support to the patients and their families in-between the visits of the professional PC team once when the lockdown regulations are relaxed. To decrease the number of visits, the organization had contacted the families of the patients with indwelling urinary catheters to purchase silicone catheter that stays in place for a longer duration without much complication as against latex Foleys catheter which was freely provided to the patients by the organization. The response was overwhelming and the families of the patients understood the difficulties and were willing to buy silicone catheter which was changed at their home by the HC team.
Established network of palliative care centers throughout Kozhikode
Since its inception, our organization has helped in establishing several PC link centers in Northern Kerala to provide PC services. These link centers care for the patients who require PC services in their locality. Although these centers cannot house inpatients, they have well developed HC team to support patients and families to get doctors consultations, basic nursing care, medicines, food, and mobilize local support to meet the essential needs. The resources of these networks of centers can be utilized to reach patients who are unable to access health-care facilities amid lockdown.
Working with high-risk population
Patients suffering from conditions requiring PC such as cancer, COPD, heart disease, and old age are susceptible to COVID-19 infection. While working with them, one needs to take all necessary precautions so that these vulnerable patients are not exposed to the infection. These precautions involve additional expenses. Given the shortage of PPE and shortage of funds, resuming regular HC visits and resuming IP care where these patients will be clustered is very challenging.
Return of Non-Residential Indians (NRIs')
The demography of Kozhikode and Kerala in general is such that, many families have one or more members working abroad, specifically in one of the Gulf countries. The same is true among the patients under our care. The initial surge of COVID-19 cases in Kerala, Kozhikode, was traced back to those who returned from abroad and their contacts. To control the rapid increase in cases, lockdown was initiated, the borders were closed and international as well as domestic flights were grounded. The government is now developing plans to operate special flights to bring back the NRIs from abroad. Keralites working in other states will also be returning, once the lockdown norms are relaxed. Hence, if quarantine protocols and guidelines are not developed and strictly followed, this can trigger another wave of infection which can affect the PC services even more.
Stigma and lack of transparency among general public
Public co-operation to lockdown norms was fairly good in Kozhikode, Kerala. This played a big role in the success story of Kerala being able to contain the disease. However, there were instances where individuals did not reveal travel history to the health-care professionals and did not adhere to the quarantine guidelines. Families not revealing to the HC team about their quarantined relatives or those having returned from abroad/other states in their home can put the HC team and their patients at risk. There were also instances of families being uncomfortable about health-care professionals visiting their homes fearing infection. To fully resume HC services to care for those suffering from life-limiting illnesses, we need measures to educate and empower the general public to cooperate with the health-care professionals and be transparent with them.
In conclusion, having good prioritization and documentation system, reinforcing infection control practices, already established emergency HC system, presence of a well-developed network of community-based PC services, and a vast network of community volunteers and awareness and cooperation of families had helped IPM to quickly reorganize its services and transition smoothly to continue to provide PC for those suffering from life-limiting illnesses in this pandemic situation. In addition to patient care, IPM is also a training center for PC. All the training programs are temporarily suspended and plans are being developed to conduct a few training programs through Zoom platform. We are also developing plans to restart IP care in a staged manner. Although community-based models with active community participation are considered a sustainable model, a pandemic situation, nationwide lockdown, and subsequent economic fallout has now challenged such models and ideas. There are several opportunities before us, we do not know how long this change is going to last or if this will become a “new normal.” We hope and pray that we develop strategies to make use of opportunities, improve our services, and continue to comfort those who cannot be cured.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.