Palliative care for advanced cancer patients in the COVID-19 pandemic: Challenges and adaptations

Abstract

INTRODUCTION The coronavirus disease-19 (COVID-19) pandemic, while precipitating a global health crisis, has also resulted in economic, social, and political devastation. As of April 4, 2020, around 1,182,827 patients were affected by COVID-19, with 63,924 deaths. In India, the count is rising steadily, with 3082 infected and 86 deaths. Experts believe that India is currently in the stage of limited community transmission, which is expected to progress over the next few weeks. An estimated 5% of those affected become critical enough to require ventilator support.[1] The frail older patients and those with underlying serious health conditions, such as cardiovascular diseases, respiratory diseases, and cancer, have an increased risk of admissions into intensive care units and death.[23] The estimated case fatality rate in cancer patients with COVID-19 is 6%,[1] as compared to just over 1% among the general population.[4] The estimated number of patients with cancer in India is currently 2.25 million,[5] with >80% presenting in the advanced stage. The impact of this pandemic on cancer patients is far-reaching, affecting cancer management, quality of life (QoL), and survival. Cancer treatment is being offered only to those patients in whom the benefits of therapy outweigh the risk of death and morbidity from COVID-19. For a substantial group of patients with metastatic cancer considered low-priority and for older cancer patients, deferring treatment will ring in a fresh wave of uncertainty, fear, and physical suffering. Palliative care with its holistic approach and focus on symptom management (physical, psychological), expertise in discussing prognostic uncertainty, establishing goals of care based on patient and family values and preferences, and support of the caregivers and families could be an option in this scenario.[67] However, India has a dismal record in palliative care service provision, with <2% of Indians having access to palliative care.[8] The governmental policies of national lockdown, social distancing, and staff shortages have further impeded the ability of palliative care providers to provide quality care. This article upholds the philosophy of non-abandonment and dignity at all times and highlights the challenges faced in the palliative care service delivery during the pandemic. It also outlines various adaptations made by the palliative care service providers across the country to mitigate these challenges. SCOPE OF PALLIATIVE CARE FOR ADVANCED CANCER PATIENTS DURING THE CORONAVIRUS DISEASE-19 PANDEMIC Cancer care during this COVID-19 pandemic is besieged with many challenges. The limited evidence suggests that hospital visits for cancer treatment increase the risk of exposure to the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2). Immunosuppression increases the risk of contracting the disease, and patients with cancer tend to have higher morbidity and mortality with SARS-CoV-2 infection (odds ratio 5.4; 95% confidence interval, 1.8–16.2).[3] Prioritization of cancer treatment is required in a resource-limited health-care setting to limit the exposure of high-risk cancer patients to SARS-CoV-2. It also allows adequate allocation of resources in a crisis situation and minimizes the exposure of the health-care staff. The ethical principles of beneficence versus nonmaleficence and autonomy aid the decision-making in such scenarios. The basic premise is that the benefits of cancer treatment should outweigh the risks. Experts recommend prioritizing cancer treatment based on the therapeutic intent, the extent of expected benefit from treatment, and the effect of treatment delays and interruptions on the overall outcomes. It should also be prioritized based on the patient and family preferences, and availability of resources [Figure 1]. Cancer-directed therapies are continued as planned in potentially curable patients, like patients with acute leukemia, lymphomas, and germ cell tumors. It is also indicated in patients in whom any delay in treatment may result in increased morbidity, like radiotherapy for malignant spinal cord compression. In conditions where the risk of SARS-CoV-2 infection outweighs the expected cancer-related outcome, shared decision-making while discussing the potential risks and benefits of planned treatment, will empower patients and caregivers to prioritize their preferences.[9] Figure 1: Prioritization of cancer treatment during Covid-19 pandemic. Adapted with permission from: Hanna TP, Evans GA, Booth CM. Cancer, COVID-19 and the precautionary principle: prioritizing treatment during a global pandemic. Nat Rev Clin Oncol 2020. https://doi.org/10.1038/s41571-020-0362-6The cohort of patients in whom cancer treatments are deferred will benefit from palliative care as they may experience an increased symptom burden due to cancer progression. Moreover, they are at a risk of increased psychological distress due to an abrupt transition in the goals of care. Bio-psycho-socio-spiritual dimensions of palliative care can improve the QoL in these patients and their families. MANAGEMENT OF SYMPTOMS DURING PANDEMICS Patients with advanced cancers experience a high symptom burden, both physical and psychological. Proper assessment and adherence to key palliative care principles ensure adequate symptom management. Pain: Opioid analgesics remain the preferred drugs for moderate to severe pain. However, the majority of Indians have limited access to morphine. Palliative radiotherapy and chemotherapy are being deferred in the current scenario. Escalating doses of opioids and the use of adjuvants may be needed for effective pain relief. Many treatment guidelines for COVID-19 advise against the use of nonsteroidal anti-inflammatory drugs, specifically ibuprofen in view of worsening pneumonia.[10] Although the evidence against its use is inconclusive, these drugs are better avoided. Paracetamol remains the first choice for mild pain Dyspnea: Patients with intractable dyspnea refractory to medical management may be started on low-dose oral morphine. Patients already on opioids need a 25%–50% increase in the dose The use of steroids: There are multiple indications for the use of steroids, especially dexamethasone in palliative care. Except for palliative care emergencies such as malignant spinal cord compression, subacute intestinal obstruction (SAIO), and raised intracranial tension, it is better to avoid dexamethasone during the current pandemic because of its immunosuppressive effects[11] Bowel obstruction: As most cancer centers are deferring palliative chemotherapy/surgery/radiotherapy, patients with metastatic intra-abdominal and pelvic malignancies may present with a higher than usual incidence of bowel obstruction. Conservative management should be the mainstay of treatment in malignant SAIO, with a focus on adequate symptom control Sepsis and pneumonia: Patients with advanced cancers and COVID-19 pose unique challenges. Atypical clinical presentation of other infections are common in immunocompromised patients, and this may apply to those with COVID-19 infections as well.[12] Differentiating the COVID-19-related sepsis and pneumonia from complications of advanced cancer may be challenging. Suspected patients should be screened for COVID-19 and managed as per the Ministry of Health and Family Welfare (MoHFW) guidelines[13] Palliative sedation: Intractable symptoms can cause severe distress in some patients and may require hospital admission with a risk of exposing patients and families to the SARS-CoV-2. Refractory symptoms can be managed by administering medications to induce a state of reduced awareness to relieve the suffering, termed palliative sedation. Sensitive communication and compassionate care will empower families to participate in decision-making. With most of the hospitals limiting inpatient admissions, triaging patients based on symptom burden helps in prioritizing care and leads to proper utilization of scarce resources [Table 1]. Inpatient care can be limited to patients with intractable symptoms.Table 1: Recommended triaging system for patients with advanced cancer who do not have COVID-19 disease:A recommended triaging system for patients with advanced cancer who do not have COVID-19 is given in Table 1. PSYCHO-SOCIO-SPIRITUAL SYMPTOM MANAGEMENT As a rule, the prevalence of psychiatric disorders is higher in cancer patients than the general population, with 30% experiencing adjustment reaction and 20% having syndromal depression.[14] Pandemics are known to increase psychological morbidity, especially in the vulnerable population, the older patients, and those with comorbidities.[15] Patients with advanced cancer and their families are likely to experience increased fear of death, anxiety, and guilt, compounded by the collective anxiety and hysteria in the community. For most cancer patients, this pandemic is a double-edged sword. Disruption in treatment will increase the risk of cancer progression, and hospital visits increase the risk of contracting COVID-19, not only for themselves but also for their loved ones. Social isolation leads to the loss of connectedness and control, which can amplify the feelings of anxiety and depression. The unpredictable nature of the pandemic and the uncertainty of cancer treatment can overwhelm the individual's and the families' ability to tolerate uncertainty. When palliative chemotherapy or radiotherapy is deferred due to the pandemic, it can lead to an acute grief reaction. The collective loss of normalcy and control that patients and families experience may augment the anticipatory grief and precipitate anger and acting out, especially targeted at the health-care systems. The untimely death of a loved one due to COVID-19 and the public health regulations in place may prevent goodbyes and mourning, resulting in unresolved grief.[16] Patients with cancer may experience spiritual distress when their beliefs and assumptions about the world being just and fair are shattered. Religious texts view pandemics as punishments for the sins and infractions of the community. This can further worsen the pre-existing spiritual distress in these patients. Loss of employment, financial hardships, scarcity of basic necessities, and the inability to access medical care and pain medications can further amplify the distress. Management of issues in the psycho-spiritual domain involves a combination of pharmacological and non-pharmacological approaches outlined in [Table 2].Table 2: Management of psychological issues by various interventionsAs one country after another is moving into the crisis mode with the lockdown impeding travel to hospitals, there is a need to move beyond traditional psychosocial care delivery. Conventionally delivered face-to-face, pandemics necessitate innovations in the provision of care, with counseling and psychosocial care being adapted to accommodate social distancing. Interventions are delivered virtually through video conferencing or telephonically. Crisis support is provided through hotlines manned by trained mental health personnel. Social support groups initiated via social media can provide the much-needed peer support for patients with advanced cancer, and community and religious leaders can provide spiritual/religious support telephonically or through social media platforms. CHALLENGES IN COMMUNICATION WITH CANCER PATIENTS DURING CORONAVIRUS DISEASE-19 PANDEMIC In the evolving pandemic, guidelines regarding cancer care are rapidly changing. Communication about the shifting goals of care poses significant challenges to the oncologists as well as the palliative care physicians. It is important to have conversations regarding advance directives and goals of care in patients diagnosed with advanced cancers.[18] An advance care plan allows the patient to document their treatment preferences and designate a surrogate decision-maker or health-care proxy to execute their decisions in case of deterioration. The intent is to begin well before acute deterioration occurs so that care can be provided in accordance with the patient's preferences. Open, honest, and empathetic communication facilitates realistic expectations about treatment goals and allows the patient and families to express their care choices.[19] For patients with advanced cancer during the COVID-19 pandemic, it provides an opportunity to shift from disease-modifying therapy to palliative care. Palliative care helps to minimize or rationalize futile interventions, shifts the focus to alleviating distress, increases patient comfort, and improves the QoL. Various evidence-based communication strategies are available that improve clinician skills in delivering bad news and facilitate effective goals of care discussions. The SPIKES protocol[20] for delivering bad news, CALMER protocol[21] for communicating and discussing goals of care in COVID-19-positive patients, and SHARE protocol[21] for appropriate resource allocation in this pandemic are some of the strategies that can be adopted for improved communication skills. CHALLENGES TO PALLIATIVE CARE SERVICE DELIVERY The present pandemic and the national strategies formulated to mitigate the spread of COVID-19 pose significant challenges to the delivery of palliative care. Effect on hospital-based palliative care centers Regular outpatient services have temporarily been suspended or have been scaled down following the MoHFW guidelines. Many patients who require palliative care may not be able to receive it in this scenario Teamwork is an important part of palliative care, and an interdisciplinary team is integral to palliative care service delivery. With the non-essential outpatient services being shut down, access to allied health professionals is limited, thereby impacting care Only patients with intractable symptoms and those requiring end-of-life care are triaged at the outpatient clinics and considered for inpatient care, leaving a vast majority of the patients with moderate symptoms unattended The rotation policy for the health-care workers, rather than an all-hands-on-the-deck approach, teams following social distancing practices, and no physical contact between the teams impacts coordination of care adversely Most patients have a limited stock of medications like opioid analgesics. Those in rural areas travel to cities and to major cancer care centers for opioids. The inability to travel depletes this supply and has the potential to create a crisis. Hospitals in India currently do not have pharmacy-dispensing wings to deliver medicines directly to the patients' homes Lack of workforce, skeletal staff availability, and restricted caregiver entry into hospitals impede the ability to provide adequate psychosocial support to the patient and their families Patients and families are being cared for by family physicians or local hospitals with little or no palliative care expertise, leading to inadequate symptom control and poor end-of-life care. Effect on hospice-based palliative care services Hospices continue to provide standard palliative care to the patients admitted to their centers In India, the current testing guidelines by the Indian Council of Medical Research recommend community testing sparingly. Hence, any patient in the community may have an unknown COVID-19 status. In view of this, hospices have considerably reduced admitting new patients. Effect on home-based palliative care services Most places in India, which run not-for-profit home care services, are scaling down their services because of the challenges involved in traveling to the patients' homes, limited resources in terms of personal protective equipment, and limited staff This leads to gaps in continuity of care and failure to provide relief from physical, psychological, social, and spiritual needs of the patients and caregivers during this pandemic, at a time when they most require it. STRATEGIES FOR EFFECTIVE PALLIATIVE CARE SERVICE DELIVERY IN THE TIME OF THE PANDEMIC The various strategies that can be adopted to mitigate the effects of the COVID-19 pandemic-related restrictions on palliative care service provision are outlined below. These strategies need to be adopted at every level-governmental, administrative, and clinical. We propose the SHARED strategy to overcome these challenges [Table 3].Table 3: SHARED strategyCONCLUSION The COVID-19 pandemic spreading rapidly worldwide has posed new challenges in all areas of health-care. The stakeholders are rapidly adapting to the changing course of the COVID-19 pandemic. In the emerging crisis, where health-care resources are stretched to the breaking point, it is important that we do not neglect the palliative care needs of those with advanced cancers. There is a need for contingency planning to prepare the health-care system to face this eventuality. Financial support and sponsorship Nil. Conflicts of interest There are no conflicts of interest.

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