Psychosocial Aspects of COVID-19 in the Context of Palliative Care – A Quick Review

To improve communication skills with reference to clarifying goals of care, resuscitation plans, and advance care plan conversations

Mindful of the lack of uniform and clear legal guidelines regarding end-of-life care in India, improving the capacity, confidence, and competence of health-care providers to discuss and document patient preferences for end-of-life care, becomes even more important in the context of COVID-19 palliative care. For many palliative care patients, treatment decisions may be re-addressed in light of the pandemic, with disease-modifying therapies either being deferred or canceled in the absence of proven benefit. Early discussion regarding goals of care is imperative in these scenarios as patients with severe COVID-19 may deteriorate rapidly and have an unpredictable course. In this setting, frontline health-care workers are called upon to have these difficult conversations. Palliative care professionals can empower frontline health workers in initiating these discussions. The guidelines developed in the e-book provide detailed algorithms to assist these practitioners in managing these discussions sensitively and carefully. Better documentation of patients' wishes and goals of care assists with achieving optimum clinical and ethical allocation of scant resources including ventilators and ICU beds. It also assists in ensuring a dignified death for those patients for whom ICU management is not recommended due to predicted poor clinical outcomes.

In supporting the health-care workforce deal with the stress of caregiving and promoting self-care

Frontline medical workers are at increased risk of psychological morbidity like anxiety and stress, depression, burnout, and posttraumatic stress disorder as a result of responding to the COVID-19 pandemic.[11] There is widespread fear about the ability of India's public health-care system to handle the surge of critically ill patients. Clinicians forced to care for an increased number of patients, in a new and unfamiliar work environment, for long hours, in the discomfort of wearing personal protective equipment (PPE), report physical and emotional exhaustion.[12] Work stress is compounded by the personal fear of contracting the illness and infecting one's family, the physical distancing from the family, and the stigma and avoidance of the health-care workers by the society.

The complex triaging systems, the inability to deliver care as needed, resource shortages, and the ethical conflicts add to emotional stress and exhaustion. Inability to balance the duty of care for the individual against population-based resource allocation is associated with moral distress in health-care providers. This distress is further amplified when care decisions are impacted by shortage of staff, supplies and space, and the absence of clear-cut decision-making guidelines and organizational support for frontline workers.[1314] Studies have shown that under normal working conditions, palliative care professionals experience levels of burnout similar to other physicians but experience higher levels of personal accomplishment.[15] This is despite daily encounters with death and dying, which can be stressful and emotionally demanding. Palliative care professionals with their competency in empathetic communication, multidisciplinary team functioning, complex ethical decision-making, and self-care strategies may assist other frontline health-care professionals in handling difficult end-of-life situations.

In supporting the health-care workers in alleviating suffering by

Addressing emotional distress

The uncertainty of the situation, concerns about symptoms, fear of deterioration in one's own physical status and death, and socioeconomic concerns lead to heightened anxiety in the general population. These are likely to be exaggerated in people already going through serious health-related suffering. The elderly and the vulnerable in the joint family systems live in constant fear of contracting the disease from the younger family members, while the younger members fret about infecting the elders. If one does get infected, it can trigger a spiral of guilt, fear, and shame. The need to quarantine entire communities with the “shelter-in-place” orders has caused significant hardships, especially in migrant workers and other vulnerable population in India. There is an increased risk of social, psychological, and emotional trauma rising from the fear, neglect, and the inability to access medical care.[16]

While many are able to deal with and adapt to the situation, in others the fear and anxiety can trigger maladaptive behaviors including substance abuse, domestic violence, and suicide.[1718] Self-medicating to assuage anxiety or using medications/home remedies to prevent or cure COVID-19 are maladaptive behaviors that are commonly observed.[19] In palliative care, the consumption of stronger analgesics, especially opioids, has to be monitored closely, especially during pandemics. Compliance with existing medication regimes may be affected. Interesting behaviors related to public responses toward the COVID-19 crisis are being studied. Irrational behavior has led to panic buying, rushing to rail and bus stations in large groups, as well as the spread of misinformation and rumors. Noncompliant behavior has been reported to be strongly linked with economic consequences of isolation and the lack of primary needs such as food and shelter for migrant populations and the homeless.[2021]

Community-based palliative care teams with homecare and volunteer networks have an established relationship of trust and respect in the community. These individuals/teams can play a crucial role in helping frontline workers identify and address the psychosocial distress arising out of this unfortunate situation.

Addressing stigma

Stigma associated with COVID-19 is a major challenge in the Indian setting. Dignity in care at the end-of-life and after death is one of the basic tenets of palliative care. Instances of refusal to cremate/bury the bodies of those affected are emerging in India, contributing to emotional distress of the family. Stigmatization has fuelled attacks on health-care providers, leading to social avoidance, rejection, and denial of health care. Stigma interferes with utilization of support systems contributing to distress. In addition, the stigma associated with mental illness prevents many individuals with emotional suffering from seeking help, thereby increasing psychological morbidity. Community-based palliative care organizations and the workforce of volunteers can assist the health-care providers in implementing interventions to mitigate the stigma of COVID-19 in communities.

Addressing loss, grief, and bereavement

The world is struggling to cope with the loss of normalcy and predictability. In addition to the losses caused by illness and death, individuals are forced to confront multiple losses including their sense of safety, control, personal freedom, livelihood, and financial security.[22] Education, employment, transport, economic and healthcare systems are disrupted which worsen the sense of collective loss and grief in the community.[22] Death and bereavement can be complicated in COVID-19. Bereavement following sudden deaths is often longer, more intense, and more prolonged than following anticipated deaths.[23] The rapid deterioration and death in COVID-19 leaves the family unprepared to cope with the loss, even in those with life-limiting illnesses. Deferring treatments for patients with cancer or other life-limiting illness can trigger a fresh wave of grief. Accessibility to quality end-of-life care and medications may be impeded by the national lockdown measures. Grieving is interrupted, resulting in anger, guilt, blaming, and hostile reaction, and may be especially targeted at health-care professionals and systems.[24] The prohibitive public health strategies enforced for infection control may prevent goodbyes and impact the traditional mourning practices precipitating complicated bereavement.[25] For many in India, the rites and rituals after bereavement are an essential aspect of mourning and imperative for the liberation of the soul. Families unable to be by the patient's side at the time of death or during burial/cremation may experience lingering mental health issues. Thus, the collective, community-oriented sense of loss in a pandemic is experienced at the individual and family level, as well as at the socioeconomic and political level. The duration of grief and bereavement may be variable based on the individual and cultural factors.[26] Facilitating meaningful final goodbyes and funerals, conducted virtually over the phone or social media platforms, may aid grieving and facilitate grief work. Palliative care providers well versed with the concept of loss and mourning can train and assist frontline health-care providers in mitigating the effects of grief and bereavement.

Addressing spiritual distress

Spirituality refers to the way individuals seek and express meaning and purpose in life, and the way they experience connectedness to self, to others/nature/moment, and to the transcendent.[27] In a pandemic, this sense of connectedness is threatened. Disruption in one's routine, roles, and work impact the sense of self. Inability to visit places of worship, partake in community activities, sporting teams, places of work, or schools may diminish the sense of meaning and purpose in life. Social distancing, isolation, and quarantine prevent visiting loved ones. Pandemics are portrayed as punishment for the sins and transgressions of the community by various religious texts.[2] If a believer integrates this sense of punishment, this can worsen feelings of guilt and remorse. Values and beliefs are questioned when there is uncertainty, threat to life, and the loss of control over outcomes. Spiritual care helps to promote adaptation and foster resilience by overcoming fear and finding hope and meaning in uncertainty.[28] Re-establishing connectedness by being available to others, demonstrating genuine concern and acceptance, actively listening, acknowledging and validating reactions, empathic communication, and attention to dignity helps to mitigate spiritual distress.[29] The e-book provides simple interventions that can be adopted by frontline health-care workers to mitigate the psycho-socio-spiritual distress in those palliative care patients affected with COVID-19.

Communication

Communication in COVID-19 can be challenging even for a palliative care clinician. Establishing rapport in an acute care emergency situation may be difficult and the nonverbal means of communication impeded with the donning of PPE. Communications with family may be restricted to the phone or social media, where the nonverbal cues may be lost. In a society like India, where collectivistic decision-making is the rule, with multiple family members being involved, phone or social media conversations can be challenging. Communication and rapport can be achieved by pasting photos/names on to PPE for self-introduction, by communicating verbally using words expressing empathy, and to have frequent, clear, and honest discussions regarding care goals.

Delivery of psychosocial component of palliative care in India

In the current scenario, delivery of specific psychosocial care can be challenging, given the sociocultural and health-care context. In India, <3% of the population have access to palliative care.[30] It is poorly integrated into the health-care system, except in the state of Kerala, which accounts for 90% of the services in the country. Even in centers equipped to provide palliative care, psycho-socio-spiritual care is not robust.[31] In addition, difficulties in conducting regular home visits may affect the trusting relationship with patients' families. Inability to fulfill the needs of families may precipitate guilt and distress in some team members. Good communication is essential in palliative care practice, and the pandemic poses an extreme challenge of maintaining trust and hope when the practices of therapeutic touch, attending to nonverbal communication, and physical presence are impeded.