Palliative care delivery in cancer patients in the era of Covid-19 outbreak: Unique needs, barriers, and tools for solutions
Correspondence Address: Source of Support: None, Conflict of Interest: None DOI: 10.4103/IJPC.IJPC_194_20
Source of Support: None, Conflict of Interest: None
Keywords: Cancer patients, COVID-19 pandemic, palliative care
Cancer is one of the major causes of disease burden all over the world. As stated by the World Health Organization (WHO) in 2018, it is the second leading cause of death across the world. Cancer patients are at high risk of severe respiratory infections due to their immunosuppression, age, and comorbidities. There is also a high rate of mortality among them due to pneumonia of viral origin. Thus, care of advanced cancer patients needs special attention amidst the pandemic of a viral respiratory illness.
Novel coronavirus (COVID-19) disease has been declared as global pandemic on March 11, 2020 by the WHO. It is caused by severe acute respiratory syndrome–coronavirus (SARS-COV-2), a beta-coronavirus, belonging to the family of coronaviridae. World is now witnessing the third emergence of SARS, previous two episodes being in the year of 2003 and 2012.,, The first case of novel coronavirus was reported in December 2019 at Wuhan, China. Since then, a total 1,914,916 numbers of confirmed cases and 123,010 numbers of deaths have been reported across >200 countries, territories, or areas by April 15, 2020.
The level of contagiousness of this infection is denoted by the basic reproductive number (R0). It is defined as numbers of secondary cases stemming from a primary case in a susceptible population. The basic reproductive number (R0) of the novel coronavirus has been found to be highly variable in different countries, and can be as high as up to 5.7. Owing to the high level of contagiousness, an aggressive contact tracing, isolation, and social distancing are the major strategies for containment of the infection. Many countries have opted for a lockdown mode to ensure an effective social distancing.
This particular situation has caused tremendous difficulty to support different health-care services including palliative care for cancer patients. Thus, a palliative care team needs to have a contingency and crisis management plan to maintain the continuity of services to a huge number of cancer patients during the pandemic. In this review article, we discuss the specific palliative care needs in cancer patients amidst the COVID-19 pandemic, barriers to meet those needs, and potential solutions of them.
A few studies from China and Italy have shown the epidemiology of COVID-19 among cancer patients.,, A study by Liang et al. has been published in Lancet oncology, which shows a nationwide analysis of patients with novel coronavirus in China with special focus on cancer patients. It showed that 18 patients (1%) out of the total 1590 cases of novel coronavirus had a history of cancer as compared to the general population (0.29%). Lung cancer (28%) was found to be the most common type of cancers among them. They also found a higher incidence of complications among the cancer patients (39% vs. 8%) (Complication defined as intensive care unit (ICU) admission for patients who require intubation and mechanical ventilation or death). Age was found to be a major indicator of severity in the cohorts of cancer patients (mean, 63.1 years vs. 48.7 years). They also had a higher incidence of smoking (22% vs. 7%) and severe baseline computed tomography (CT) scan manifestations (94% vs. 71%). Four (25%) out of 16 patients (2 out of 18 patients had unknown treatment status) received chemotherapy or surgery within the last 1 month and the rest of them were cancer survivors after primary surgery.
Another retrospective analysis from China revealed data of 28 cancer patients infected with COVID-19. These patients had fever (82.1%), dry cough (81%), and dyspnea (50%) as presenting symptoms. Laboratory investigations revealed lymphopenia (82.1%), raised C-reactive protein (82.1%), anemia (75.0%), and hypoproteinemia (n = 25, 89.3%).
Both the studies, have a very small sample size with much heterogeneity regarding disease duration, course, origin, treatment history, and need to be extrapolated on larger cancer populations with caution.
The initial data from Italy show that around 20% of the patients who died of coronavirus infection had a history of cancer in the last 5 years. However, this study only considers patients who died due to COVID-19 infections. Thus, these findings also cannot be interpreted for the overall population.
Hematological malignancies are another group of cancer, which is at high risk of COVID-19 patients. Before the emergence of SARS-COV-2, it was shown that 30% of patients with history of hematopoietic stem cell transplantation had progression from upper to lower respiratory tract infection due to seasonal less pathogenic coronavirus.
Thus, patients with lung cancer and hematological cancers, receiving chemotherapy or surgery, and old age with multiple comorbidities are expected to have a greater chance of having COVID-19 infection. However, further good quality data with specific analysis of subgroup patients are warranted to establish the epidemiological links and to assess the impact of the pandemic on cancer patients precisely.
Patients with novel coronavirus infection commonly present with symptoms such as fever, cough, and shortness of breath. In severe cases, they may present with acute respiratory distress syndrome (ARDS) and septic shock too. As per the WHO, cases are being defined as suspected, probable, or confirmed. People who have developed signs of acute respiratory tract infections with a travel history within 14 days or belong to a location with community transmission are considered as suspected cases. A laboratory evidence of COVID-19 infection irrespective of presence of symptoms is to be declared as confirmed cases.
The patients with cancers, specially primary or metastatic lung cancers, also do often present with similar symptoms, e.g., cough, fatigue, dyspnea, and chest pain. In addition, the similar symptoms can also be caused by the lung injury following radiation or during febrile neutropenia following chemotherapy. Thus, in this era of pandemic, it is extremely challenging for physicians to differentiate and diagnose COVID-19 infection in these patients. Therefore, cancer patients need more careful and strategic screening for COVID-19 infection.
According to the WHO definitions, an epidemiological link within a 14-day period is required along with clinical symptoms and laboratory evidence. This is a major reference point in differentiating the diagnosis in lung cancer patients. History regarding previous treatments can also serve as a clue. Additional imaging modalities, e.g., CT scan, can also help to differentiate between the diagnoses. Liang et al. reported that cancer patients with COVID-19 infection presented with more severe CT image changes (94% vs. 71%). Thus, for acute onset dyspnea in cancer patients, the epidemiological and contact history should be checked first, followed by combining a treatment history and laboratory findings. In patients who have received a recent chemotherapy, neutropenic sepsis should also be ruled out simultaneously, as it is a medical emergency.
Palliative care encompasses a holistic care which addresses several needs of a patient, including their psychological and social one. During the pandemic, the process of isolation, quarantine, and social distancing affects these needs to a great extent. Depression (15% major, 20% minor) and anxiety (10%) are common findings in cancer patients. In the era of pandemic of an infectious disease, fear of deprivation from standard treatment, fear of getting the infection, fear of social isolation and stigmatization, and news of deaths, may augment these psychological issues.,,, Moreover, rapid surge of cases and high fatality rate causes greater consumption of medical resources for infected patients including drugs, equipment, and specialist palliative care physicians.,,, Thus, with limited resources, we need to identify the specific needs of cancer patients and barriers to meet them in the pandemic era, as early as possible to maintain the continuity of care. The different palliative care needs of cancer patients, caregivers, and health-care workers during COVID-19 are summarized in [Table 1].
The barriers of providing a holistic care to the cancer patients during a pandemic encompasses three levels: patient, caregiver, and health system itself [Table 2].
Weighing the balance between infection prevention and decreasing the need of social isolation is a real challenge for cancer patients. Social distancing should be practiced in place of social isolation in these patients. As lack of social support is anticipated during the period of lockdown, there should be timely discussion regarding planning for help among the peer group. Increasing social support can also improve the chance of access to systemic therapies and in hospital services. The patient and family members should be thoroughly educated about infection control strategies to decrease the risk of infection. Telemedicine is a viable option for managing their symptoms and psychological issues without increasing further risk of infection.
During the pandemic, family-centered care is becoming the popular model for patient care. Family members of patients also face three types of barriers while caring their patients during pandemic. These are social distancing and related health hazards, a lack of social support system, and economic pressure due to loss of jobs. To minimize the effects of social distancing, some relaxation for physical presence of family members at bedside with adequate precautions can be allowed to a pediatric patient or end of life care (EOLC) patients. Caregivers should be involved in early discussion of care of goals with the patients and advanced care planning., Difficulty in communications with caregivers can be overcome by compassionate conversations and reassuring them., Telemedicine capacity should be strengthened with active participation of the family members along with patients and physicians for shared decision-making and care., One needs to consider the fact that all caregivers may not be well equipped for videoconferencing and thus a simple teleconsultation via phone may be the only option for them. During pandemic, the caregivers often face the grief of losing loved ones. The limited access and resources hampers appropriate bereavement services to them. Proper communication, early recognition of stressors during EOLC, and developing personalized care plans for them can be essentially helpful for them.
The health-care system has also undergone a lot of modifications in their practices due to the strict impositions of lockdown. The limitations on movement, sealing of borders caused lack of availability of essential drugs, especially opioids. Telemedicine services with video calls for the prescription of opioids can be a solution to this. The demand of acute palliative services for nonmalignant patients during pandemic rises sharply, diverting the resources for them. In addition to this, health-care workers often need to self-isolate them following an exposure, which decreases the manpower to work. To manage the huge number of referrals, hospitals, hospices, and community-based care organizations should be well trained and well equipped., The ethical dilemma for allocating resources is another valid concern.,, Effective triaging systems should be established for careful rationing of palliative care resources for patients. It is important to take care of the service providers too. Long working hours and risk of accidental exposure may cause more stress and burnout symptoms among cancer service providers. Thus, their well-being should be considered and integrated during making a policy for hospital preparedness.
To maintain the quality palliative care services for cancer patients, we need to be prepared to meet the increased needs. Resource limitation and personnel mobility restrictions are major barriers for that purpose. Hence, we need to formulate a “pandemic plan” to overcome these barriers. Developing a triaging system to allocate the resources effectively, protocol-based symptoms management, and incorporation of telemedicine is the key components of such plan. The objectives and principles of such a “pandemic plan” are minimizing the risk of infection with providing quality of life as much as possible.
Preparedness of palliative care: Preparing a “Pandemic Plan”
In view of oversaturation of the health-care system and limited resources, formulation of a pandemic plan to maintain continuity of palliative care services and meet the increased needs of cancer patients is of utmost importance. The “4S” model for pandemic preparedness was proposed by Downar et al. during the influenza epidemic in 2010. There is an expected surge of requirement of acute palliative care services and resources for noncancer patients during a pandemic. To maintain the equity of services to the cancer patients, we need to categorically prepare our palliative care unit. The preparedness should focus on the following domains of palliative care resources:
Build up the reserve for essential medications and equipment for managing common symptoms and palliative emergencies for cancer patients, e.g., opioids, haloperidol, midazolam, paracetamol, steroids, oxygen, infusion pumps, subcutaneous cannula, etc., Adequate supply of personal protective equipment (PPE) should be arranged for the health-care workers.
Due to deployment of staff in the frontline, we need to anticipate a decrease in manpower and reorganize the unit accordingly. Specialist palliative care services may not always be available for the cancer patients during a pandemic. Hence, all potential health-care workers who can be trained for palliative care services, including oncologists, nursing staffs, community health workers should be identified at earliest and trained for symptoms assessment, triaging and advanced care planning. Allied health-care workers, e.g., spiritual or social workers should also be identified to provide psychosocial support for the cancer patients.
We need to accommodate a large number of dying patients. This mandates creation of more spaces and wards with facilities for EOLC. The hospices and community health-care facilities should be used with its maximum capacity and potential. Isolation wards with access to palliative care services should be established in all cancer care hospitals to accommodate infected cancer patients. In addition to these, we need to reorganize our office spaces to maintain social distancing norms.
Triaging is the best tool for allocation of resources effectively during a pandemic. There should be a triaging system for in hospital palliative care services, home visits and community-based palliative care, and initiation of EOLC. An easy protocol for symptoms management should be developed for cancer patients. This will ease the job of training of physicians and other health care workers for providing community-based services. Patients should be educated with flyers mentioning DO's and Don'ts for infection control. Building up a system of telemedicine is the need of the hour. It can be used for symptoms management, psychological support, educating family patients, and health-care workers. Last but not the least, a flexible appropriate system for death rituals and bereavement support should be established.
Skills of communication
Communication with a dying patient is a skill indeed. During a pandemic, difficult access to the patients, isolation, and disconnectedness from family make it more challenging. Educating the staff for skills of communication at the end of life should be a priority. Acknowledging, listening with compassion, and repeated reassurance to patients and relatives are the key of such communication skills. New technological supports, e.g., use of smartphones for video calling, are of great adjuncts to develop the communication system.
Health-care workers undergo tremendous physical and mental stress during a pandemic. The disrupted work schedule, separation from family, seeing patients dying daily, and fear of infection make them really vulnerable. Peer support groups should be established to take care of each other. They should be connected with family over phones. Team leaders should learn how to help the members in taking morally challenging decisions and keep them motivated.
Considerations while developing standardized protocols for palliative care and symptoms management
Due to limited resources, several restrictions on movement and social distancing, managing all cancer patients' needs by specialist palliative care teams may be out of our capacity. Every specialist palliative care centers need to coordinate and involve other primary and secondary level health-care systems of their regions for providing a quality palliative care for all cancer patients when they are in need. To enable this, it is important to develop an easy standardized protocol for common symptoms management of cancer patients. It should also include management of common symptoms due to COVID-19 infection, e.g., fever, breathlessness, cough, respiratory secretions, and delirium [Table 3].
There are some special considerations and controversies for cancer patients during symptoms management amidst COVID-19 pandemic. Nonsteroidal anti-inflammatory drugs (NSAIDs) are one of the most common drugs for management of cancer pain, as proposed by the WHO. However, there are some controversies regarding its use in COVID-19 infection. Use of indomethacin increases the express of angiotensin converting enzymes-2 and thus can facilitate COVID-19 infection. In contrast to this, in a study evaluating indomethacin in gout and rheumatoid arthritis patients, it was found to have antiviral activity bothin vivo andin vitro against human novel coronavirus.
Similar controversy exists for the use of steroids in these infected patients. In most of the trials, it showed a positive impact due to their immunomodulatory effect., But, the matter of concern is the effect of steroids on viral replication and associated side effects. Prolonged administration of steroids in the second or 3rd week has shown increase in viral load and consequently severity of the disease including ARDS.,
All the data available for use of steroids or NSAIDs are inadequate to draw any conclusion. Thus; it is suggested to continue the medications in cancer patients for symptoms management, as maintaining quality of life is of primary importance in them.
For patients of analgesics, a dose of at least 1–3 months should be provided with proper documentation and record keeping. This will minimize unnecessary travel to the hospital and chances of getting the infection. Patients with advanced malignancy should be managed at home as much as possible. A single fractionated radiotherapy should be considered for cord compression or pain., For other oncological emergencies, e.g., superior vena cava syndrome, raised intracranial tension due to brain metastasis, tumor bleeding should be considered for short courses of radiotherapy. Patients who require frequent hospital visits for drainage of pleural or ascitic fluids, indwelling long term catheters, e.g., PleurX should be used.,
Blood transfusion also requires special attention in the pandemic era. Cancer patients, especially the hematological cancers, often require blood transfusion. Due to social isolation, community spread of COVID-19 infection, less frequent organization of blood donation camps, there may be shortage of supply of blood at the blood banks. Thus, a restrictive blood transfusion strategy should be adopted for these patients. Iron, Folic acid, Vitamin B12 or Erythropoietin should be considered early to decrease transfusion requirements of cancer patients.,,
Education of cancer patients and family for prevention of infection
COVID-19 infection is a highly contagious one. Cancers patients are considered to be at high risk of the infection. Thus, a robust infection control strategy has to be applied for them. Social distancing, restricting personnel mobility and hygiene practices are the cornerstone of this strategy. Health care workers are also at high risk of getting the infection. They should adopt to infection control measures, maintaining good hand hygiene, wear masks and other PPE as mentioned in the interim guidance by WHO., [Table 4] summarizes the general and special precautions to be taken by cancer patients for effective infection prevention measures. Effective implementation needs educating patients and their family members regarding these measures. Information booklets with images or videos demonstrating hand hygiene steps are effective tools for that purpose. These precautions are to be followed by all cancer patients, but, more robustly and religiously by patients with age >60 years, lung cancers, with comorbidities, history of smoking, history of chemotherapy, immunotherapy, stem cell transplantation or surgery within last 1 month.
Triaging cancer patients for in hospital palliative care and allocation of palliative care resources
In a limited resource setting in the era of pandemic, we need to redefine our hospital admission criteria for palliative care of cancer patients. The idea of this triage is to admit only those patients, who require urgent in hospital palliative intervention. This will minimize the risk of infection. The oncological patients can be categorized [Table 5] as high priority (Red), medium priority (Yellow) and low priority (green) for the need of palliative care., The high priority patients should receive in hospital palliative care, medium priority patients may be considered for in hospital palliative care after failure of home-based management, whereas low priority patients should be managed at home.
Triaging cancer patients for end of life care
Every patient has the right to die with dignity. EOLC practices ensure a good death for patients. For cancer patients there are several triggers for initiating EOLC plans, e.g.: advanced disease, increased age, failure of curative therapies, a poor palliative performance scale or palliative prognostication index.,
During the pandemics, our critical care set up and ventilators are overwhelmed with patients. COVID-19 patients often do develop ARDS and thus require ventilation. In this scenario, ventilator triage is the most difficult one, as aptly described by Truog et al. Sequential Organ Failure Assessment score is a key tool to predict the severity of organ damage in cancer patients and thus helpful for triaging cancer patients for ICU admission. During the Influenza pandemic, Guest et al. laid out a triage plan for ICU admission and ventilation. They predefined some exclusion criteria for ICU care, such as:
There is no data available yet about the impact of COVID 19 infection on the survival of advanced cancer patients. We suggest a potential triage system [Table 6] for EOLC in cancer patients considering the adverse effects of systemic response of COVID infection in advanced cancers. A well planned study is needed to prove the validity and outcome of such triage system. The difficulty in monitoring the patient during EOLC can be mitigated with acquiring telemetry beds., It may decrease the requirement of multiple visits by health workers and consumption of PPE. The decision for initiation of EOLC has to be in consensus with primary oncologists treating the patient and family members. Family members can be contacted via telecommunication for this purpose if the patient is in isolation due to infection. In such patients, who are in isolation and away from family, we have to be extremely compassionate to discuss and execute the EOLC.
Home-based palliative care of cancer patients during pandemic: Utility of a two tier triaging system
Community-based and home-based care of terminally ill cancer patients is an essential element of a quality palliative care. But, home visits of cancer patients by the palliative care team is a two edged sword. On the one hand, it is required to maintain the continuity of quality palliative care especially during a pandemic when there are several restrictions to travel and access to in hospital health services. On the other hand, it increases the chance of infection in both patient and health-care workers. To decrease this problem, a “Double Triage” model has been proposed by members of Tuscany Tumor Association in Italy in view of COVID-19 pandemic. It involves two tiers.
It is a telephone-based survey. Patients are asked if the patient or any family member has any of the following symptoms in the last 48 h: fever, breathlessness or cough; whether the home belongs to an outbreak area; whether patient or family members have any history of direct contact with known or suspected COVID-19 patients. The patients who are found positive for this telescreening are referred to designated health care facilities for COVID-19 screening.
The patients who are found negative in the first triage undergo a telephonic assessment for symptoms severity, symptoms burden and expected life expectancy with PERSONS score, and Palliative Prognostic Score. Symptoms severity was classified as uncontrolled (any item of PERSONS score has a numeric rating scale [NRS] >7); moderate (any item in PERSON score NRS 4–6) and Mild (any item PERSONS score NRS < 4). Based on these scoring systems, they created a triage system [Table 7] and planned the frequency of home visits.
Scope of hospices during pandemic
Hospices are the integral part of the quality palliative care system for cancer patients. Rapidly deteriorating respiratory symptoms in the terminal patients may increase hospice referral rate. Potential of these hospices are tremendous in context of such an overwhelmed system. They have potential to respond rapidly and flexibly in response to the pandemic., They can be used as a setting for symptoms management and EOLC for infected cancer patients, who need isolation. The preparedness of hospices essentially should follow the “4S” model, which has been previously described. Protocol-based symptoms management, providing psychological support, providing bereavement services and providing assistance for telemedicine setup are some of the major potential contributions of the hospices during epidemic. One major problem for the hospices are lack of funds. Most of the fundraising events for the hospices stand cancelled during the epidemic. Thus, the government needs to find out all the available hospice services and integrate their services with the health care system during pandemic preparedness.
Scope of telemedicine
Telemedicine has already been a part of routine palliative care for cancer patients in both urban and rural areas. But, during the pandemic the importance has increased several folds., It not only assists to manage patients symptomatically, also helps for patient assessment, triaging and providing psychological and social support for both outpatients and in patients.,,, This ensures social distancing, decreases unnecessary hospital visits and thus decreases chance of infection to both patients and health care workers. Additionally it also helps to preserve the valuable health resources. Use of advanced technology and audio visual medium in smart phones or computers has made the process more dynamic. The setup needs consideration for both the patient and physician. Every institute should choose one or two standard electronic platforms for telemedicine consultation, which preserves the confidentiality and safety of data. Patients should be informed and trained for the telemedicine platform use during their hospital visits to avoid chaos during the actual time of emergency. One key contact person should be identified for technological liaison for the family or patient. The hospital set up for telemedicine should be a quiet and well-lit place with good internet connectivity. Physicians from many specialties can join together for an integrated decision-making for both outdoor and in patients., Long waiting list for a telemedicine appointment, technological glitches and a variable technological literacy of patients are some of inevitable drawbacks of telemedicine. Patience is the only key solution to these unavoidable problems.
COVID-19 pandemic has caused an impact on every sector of the health care delivery system including palliative care for cancer patients. As cancer patients are at high risk of getting infected, they need strict social distancing and infection control measures. Nationwide lockdown imposes additional difficulty to access routine oncological services, opioids, EOLC and psychological supports by palliative care physicians. Health-care workers including community-based palliative care service providers are also at risk of infection and psychological distress. We need to prepare the palliative care team to overcome these barriers with proper strategy. This includes stockpiling adequate drugs, instruments, resources; developing standard protocols for symptoms management; educating the patient and family; shift the care model to a family centric one; building up communication skills and triaging priority patients for in hospital and community-based palliative care services. Strengthening the hospice care services and building up the multidisciplinary telemedicine service capacity are some of other essential keys to maintain the continuity of holistic service to cancer patients during pandemic.
We are thankful to all the residents and faculty of Department of Oncoanaesthesia and Palliative Medicine Dr. BRAIRCH, AIIMS, Delhi, for their continuous efforts serving Palliative Care during the Covid pandemic.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
[Table 1], [Table 2], [Table 3], [Table 4], [Table 5], [Table 6], [Table 7]