The pathway to comfort: Role of palliative care for serious COVID-19 illness

Why palliative care in COVID-19 illness?

The coronavirus (COVID-19) pandemic and its mitigation measures have resulted in a humanitarian crisis and are redefining the global health-care scenario. With millions affected, the World Health Organization (WHO) is reporting an average death rate between 2% and 4%, with the death rate among elderly patients at 15–22%.^[1] Patients with severe life-limiting illnesses such as advanced cancer, end-stage organ impairment, comorbidities, and the elderly are at increased risk of mortality from COVID-19. Triaging policies set according to local exigencies might triage this subset of patients with severe COVID-19-related respiratory illness to receive only supportive care.^[2,3] Those with serious acute respiratory illness secondary to COVID-19 not receiving or not eligible to receive aggressive intensive care management should receive appropriate symptom management measures.^[4] As much as physical repercussions of the disease demands attention, the mental health issues also need to be addressed.

What is palliative care?

Palliative care, with a biopsychosocial-spiritual model of care, is an active holistic care of individuals across all ages with serious health-related suffering due to severe illness and especially of those near the end-of-life.^[5] It emphasizes on early identification of symptoms and its control, empathetic communication, psychosocial and spiritual support, end-of-life care, and bereavement care.

Who should receive palliative care in a humanitarian crisis?^[6]

A subset of the population with COVID-19 will develop severe symptom burden and respiratory distress. Not all will be eligible for aggressive intensive care management due to their underlying conditions, especially those who are elderly with multiple comorbidities, end-organ impairment, and advanced cancer.^[3] When the health-care system is overwhelmed with COVID-19 patients, and the resources are limited, these patients may be triaged for supportive treatment only. This guideline addresses the symptom management and supportive care strategies in patients with serious COVID-19 illness not suitable for intensive care treatment and ventilation.

COVID-19 patients not suitable for ventilation are categorized as stable, unstable, and end-of-life. The categorization is based on the early warning parameters recommended by the National Health Service and WHO.^[7,8] The parameters used in categorization are early warning scores, respiratory rate, and oxygen saturation [Tables 1 and 2].^[9]

Palliative care triaging in COVID-19 is classified into four categories [Table 3]. In the patients with code blue and red, palliative care should be integrated with the acute services and disaster response team for rapid and emergency palliative care.

Physical symptom management

The physical symptoms could be due to the direct effect of COVID-19, exacerbation of pre-existing condition, or side effects of the treatment. In this review, we will be discussing the symptoms that are caused by the direct effect of COVID-19. Breathlessness, delirium, respiratory secretions, and pain are the common symptoms that need immediate attention [Table 4].^[10]

Dyspnea can develop in COVID-19 patients with severe acute respiratory symptoms.^[11] The intensity of dyspnea can be assessed using visual dyspnea scale and appropriate management can be initiated. Delirium is common in patients with acute and serious illness needing ICU care or at the end-of-life either due to sepsis, metabolic disturbances, cerebral hypoxia, or medications. Patients with delirium may have varied presentation from hypoactive to/or mixed type of delirium with fluctuating levels of activation which needs to be recognized and managed.^[12] Respiratory secretions seen in 20–90% of patients in the last days or hours of life can be very distressing. Interventions focused at reducing secretions aim to alleviate the distress of the care providers, even though the patients may not be aware of this.^[13] Etiology of pain in an ICU setting could be multifactorial and can be due to illness per se or due to medical procedures and invasive interventions. Proper assessment and management prevents distress and suffering of the patients and their families and aims at providing good end-of-life care.^[14]

Management of intractable symptoms

In a subset of patients, adequate relief of symptoms with the above measures may not be possible. These patients can experience increased distress and are best managed by administering medications to induce a state of decreased awareness. Palliative sedation is used to relieve the suffering caused by intractable symptoms.^[15]

End-of-life symptom management of serious COVID-19 patients not ventilated or discontinued ventilation

Patients who are not ventilated or discontinued from ventilation can develop severe breathlessness, delirium, and moist breathing. A combination of medications either as a continuous infusion or intermittent dosing along with breakthrough medications can be administered to such patients.^[16] Anticipatory prescription would help address the specific symptoms at end-of-life and reduce distress [Table 5].

Psychosocial support

Patients and their families diagnosed with COVID-19 undergo a great deal of suffering caused by the physical manifestation of the disease, the uncertainty, fear of illness and death, stigma, and the socioeconomic hardships. Palliative care focuses on alleviating suffering, both physical and psychological. The various aspects of psychosocial distress among patients with COVID-19, their caregivers, and health-care providers are outlined below and recommendations provided for their management.

Communication tips for health-care providers during COVID-19

Many health-care providers find communicating the diagnosis and prognosis in the setting of serious illnesses challenging, more so during the COVID-19 pandemic. The physical distancing norms, the PPE, the stigma, and lack of time and skill, and the sudden deterioration that occurs in this setting make these conversations extremely difficult.

Health-care providers need to communicate effectively to

1. To share information in a timely, clear, and precise manner with patients/families

2. To treat patients nearing end-of-life and their families with dignity and compassion

3. To promote collaboration between patients/families and health-care providers and local bodies to ensure adherence to public health norms.

Steps for communicating with patients affected by COVID-19 and their families^[10,17,18]

1. Ensure comfort

2. Check emotions

3. Reassure the family and patients

4. Assess need for information and elicit concerns

5. Deliver information with empathy

6. Acknowledge and validate emotions

7. Address anger and explore reason. Call for help if the patient/caregiver is violent/agitated or in the presence of a mob.

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Figure 1:

Stepwise approach for palliative sedation.

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Skills for communicating in times of crisis to discuss resource allocation^[10,18]

1. Explain the ICMR guidelines for the management of COVID-19

2. Explain what this means to the patient – Talk about what you will do first and then what you cannot do

3. Assert what care you will provide

4. Respond to emotion

5. Reassure that there is no bias for any patient and same protocol applies to everyone.

Loss, grief, and bereavement

Patients and families diagnosed with COVID-19 experience a profound sense of loss. Most of them are unprepared for the rapid deterioration in health. This is coupled with other losses such as the sense of security, livelihood, financial security, personal freedom, and support systems. Grief is the response to the event of loss. Bereavement is the loss experienced due to the death of a loved one. Family members who are unable to be at the bedside of their dying patients or see them one last time may experience feelings of guilt and remorse. Loss, grief, and bereavement can be complicated in critically ill COVID-19 patients and their families. Attending to this distress in an important component of palliative care service provision.

Steps to handle grief and bereavement^[18]

1. Recognize distress

2. Recognize grief

3. Rule out psychiatric morbidity

4. Initiate grief interventions - Supportive psychosocial and grief interventions

5. Referral to mental health experts in case of complicated/ difficult grief.

Psychosocial distress

Patients with COVID-19 and their families are likely to experience increased distress from the time of diagnosis, during quarantine/isolation, when the patient becomes symptomatic, or when the illness worsens and finally leads to death. The psychological morbidity can start immediately or can develop later. What is known is that the mental health effects of the pandemic extend beyond the period of the pandemic leading to short-term and long-term psychiatric morbidity. Patient/ families seeking palliative care in this situation are likely to be in extreme distress and assessing and managing distress is an important part of palliative care service provision.^[10]

Pathway for assessing psychosocial distress involves following steps

1. Screening for distress

2. Explore current concerns

3. Evaluate risks

4. Assign risk stratification to appropriate therapy.

Managing of psychosocial issues in critically ill patients with COVID-19 and their families

Psychoeducation which involves giving honest information in simple and accurate messages, avoiding false reassurances, maintains a calm behavior while sharing information with groups of affected people, families are an important aspect of psychosocial care. Support to enhance coping includes providing reassurance, facilitating ventilation and validation of feelings, helping normalize anger and grief, and promoting realistic hope and goal setting. Psychotherapeutic techniques such as cognitive restructuring, relaxation techniques, yoga, mindfulness, problem-solving therapy, and social skills training have proven efficacy in crisis situations. Addressing spiritual distress by reestablishing connectedness, therapies to foster meaning and purpose at end-of-life like dignity conserving care and therapy, meaning-centered psychotherapy, acceptance, and commitment therapy enhance well-being at end-of-life.^[19] Pharmacological management is indicated in the presence of psychiatric illness along with supportive therapy. Drug of choice for anxiety and depression is selective serotonin reuptake inhibitors such as escitalopram 10–20 mg/day or sertraline 50–200 mg/day. In COVID-19, patients may experience panic, insomnia, and anxiety due to diagnosis, uncertain disease course, fear, and stigma of the disease. In such patients’ shorter-acting benzodiazepines like lorazepam, 1–2 mg can be prescribed. However, care should be taken to taper and stop the same once the patient is better, as benzodiazepines have addictive potential. Agitation, psychotic episodes, and delirium could be managed with antipsychotic medications such as haloperidol 2.5–5 mg/day or olanzapine 5–10 mg/day.^[10,18]