What are the challenges to providing palliative care during a viral pandemic?

Palliative care focuses on 3 domains: management of patient symptoms; discussion of patient wishes, expectations and values via advance care planning and articulation of goals of care; and supporting families of those with life-limiting illness.3 We expect the current SARS-CoV-2 pandemic to produce a surge of patients who present with acute respiratory failure due to pneumonia, including symptoms such as fever, dyspnea, respiratory congestion, pain, nausea and delirium. The risk of death is higher for older adults, particularly those with frailty and comorbidities. Many people already have advance care plans that stipulate that comfort measures are to be used if they become seriously ill. Other patients who are intubated and receiving mechanical ventilation but are not improving clinically will be extubated. A third group of patients may be denied ventilation because of resource scarcity. Thus, in a viral pandemic, we expect the need for palliative care to increase substantially. Moreover, palliative care services will need to be available across many different care settings, including intensive care units (ICUs), hospital wards, emergency departments and long-term care facilities, where some of the patients at highest risk reside. The latter, however, are chronically understaffed and may be undersupplied with the medications and palliative care delivery systems needed to control severe symptoms.

Shared decision-making between clinicians and patients is a core process in planning for the end of life; however, in a pandemic scenario, patient autonomy to choose life-prolonging measures or location of death could be severely restricted as a result of public health directives and resource availability. Patients may not be offered mechanical ventilation even if they desire it. Patients with coronavirus disease 2019 (COVID-19) may need to be confined to a space (e.g., a ward for patients with the disease) that is not of their choosing. Furthermore, as epidemiological information about SARS-CoV-2 is still evolving, prognostication could be quite difficult, leading to uncertain outcomes for patients with COVID-19–associated pneumonia and respiratory failure. These situations will likely cause considerable distress among patients, families and health care teams.

Patients and families have emotional, psychological, social and spiritual needs, which often are addressed by an interprofessional palliative care team approach involving a physician, nurse, social worker and spiritual care worker. In a pandemic, patients dying of viral pneumonia caused by SARS-CoV-2 may face isolation because of visitor and travel restrictions. Furthermore, overstretched health care teams may be unable to spend time at the bedside or to physically examine patients regularly, which could negatively affect how patients perceive their care.4^,5

What can we learn from previous experiences with providing palliative care during pandemics and other humanitarian emergencies?

Previous mass casualty events, such as acts of terrorism, natural disasters or epidemics, have so overwhelmed health care systems that they could no longer provide equal access to care. Generally, these situations fall into 1 of 2 categories: “big bang” events such as airplane or train crashes, and “rising tide” incidents such as viral epidemics.6 The main goal of a coordinated response from public health and disaster-planning personnel is (appropriately) saving the maximum number of lives possible. Yet, despite a large body of literature and experience with triage, little has been written on how to manage those who are not offered life-sustaining measures. Indeed, one source of anxiety to both health care providers and members of the public is the concern that triage processes might lead some patients to receive no care at all or perhaps to have their lives ended intentionally without their consent.2 This would compound the tragedy of triage in a pandemic — patients are first denied life-sustaining therapy and then they are not provided appropriate symptom control. They die at the wrong time, in the wrong place, and they may get the wrong care. Patients should always have access to high-quality palliative care as a basic human right,7 but, in a triage situation, our obligation to provide palliative care for those denied life-sustaining measures is increased. Past experiences with viral epidemics, such as Ebola virus, severe acute respiratory syndrome (SARS) and HIV, have emphasized the integration of palliative care as an essential part of any health care intervention.8^–10

How could palliative care be provided during a pandemic?

In 2008, the US Task Force on Mass Casualty Critical Care published a framework for mass casualty events that comprised “stuff,” “staff,” “space” and “systems,”11 which was adapted previously to the palliative care context.2 As experienced palliative care providers, we consider it important to add 4 additional elements: “sedation,” “separation,” “communication” and “equity” (Box 1).

Box 1:

A palliative care pandemic plan for management of coronavirus disease 2019 (COVID-19; updated from Downar and Seccareccia)2

Stuff refers to medications needed to provide comfort and the means to administer them to a large number of patients. This may be problematic during the SARS-CoV-2 pandemic because regulations in many countries preclude the creation of easily accessible stockpiles of opioids. In addition, long-term care facilities may not have sufficient drugs on hand to treat more than a few patients for a long period, and these drugs may not be available quickly at the bedside. Preparing and distributing sufficient numbers of “palliative medication kits” could help address this issue in any setting with substantial numbers of patients who might not survive.12^,13 Ideally, these kits would include opioids to alleviate pain or dyspnea, haloperidol for nausea or agitated delirium, scopolamine for respiratory secretions, acetaminophen for fever and chills, and midazolam for sedation (Table 1). Kits should also include subcutaneous cannulae to deliver these drugs. Infusion systems (e.g., pumps or spring-loaded syringes) should also be available for patients who need continuous medications. We suggest stockpiling sufficient numbers of kits in appropriate locations to ensure availability for a variety of clinicians including paramedics, staff of long-term care facilities and family physicians. Personal protective equipment (PPE) should also be stocked and available to palliative care providers, especially those who visit patients at home. If community providers are unable to provide treatment, their patients will present to acute care and exacerbate the crisis further.

In terms of staff, because palliative care specialist teams cannot provide direct care to all patients who are dying during a surge, regional pandemic planning should include engagement of all interprofessional health care teams who have training and experience in end-of-life care. Spiritual care staff and social work should be ready to manage common psychosocial needs such as grief and bereavement. To build further capacity, focused education on end-of-life care for patients with COVID-19 should be provided to frontline health care providers such as primary care physicians, nurse practitioners, paramedics, emergency department staff and nurses in long-term care facilities. This education should focus on the use and titration of opioids for dyspnea. Several studies highlighted the safety and efficacy of opioids for treating dyspnea in advanced lung disease,14^,15 improving respiratory mechanics in chronic lung disease,15 and reducing dyspnea and tachypnea without causing a rise in the level of carbon dioxide.16^,17 All front-line providers should feel comfortable using symptom-targeted opioids early for dyspnea without waiting for respiratory failure to develop. Breathing is essential for life, but respiratory distress is not.

A 2006 report about hospice use in Taiwan during the SARS outbreak found that palliative care space had the potential to be underused.18 During an epidemic, people try to avoid health care facilities, and normal referral and transportation systems are disrupted. Paradoxically, even though more people are dying, they are likely to die in circumstances that prevent them from accessing hospice beds. Thus, new space may be needed to care for large numbers of patients who are dying of COVID-19–associated respiratory failure. This may be a specialized inpatient ward or a separate location adjacent to a hospital if transport to hospital is not feasible. Patients at home or living in a long-term care facility could be cared for on site, although they may need to be sequestered from others. A quiet and peaceful environment is recommended to support patient dignity in the last hours and days of life.

New systems are needed, including a triage system to allocate clinicians who could provide both primary- and specialist-level palliative care (Box 2). Symptom management for most patients with pneumonia is straightforward; a standardized order set (Table 1) and titration parameters (https://palliativecare.med.ubc.ca/coronavirus/) might reduce the need for referral to a specialist. Virtual visits can optimize efficiency and reduce risk of infection during a pandemic, and providers who are required to self-isolate or quarantine can continue to provide care. Palliative care providers should also anticipate that they might become sick or be asked to cover for sick or quarantined colleagues. As many palliative care providers work with little or no backup, this could have a dramatic effect on service provision. Providers should form (or join) larger groups of palliative care providers to help with cross-coverage and fluctuations in workload. This would also facilitate collegial wellness check-ins.

For symptoms of COVID-19 that are refractory to common comfort medications, palliative sedation is appropriate. Palliative sedation involves the use of sedatives at end of life to reduce a patient’s level of consciousness so that they are not suffering. Protocols are accessible on the Internet,20 and, if available, palliative care consultants should support providers who are not experienced in providing this procedure. In our opinion, palliative sedation is preferable to medical assistance in dying (MAiD) for patients with severe respiratory failure caused by SARS-CoV-2, given the 10-day reflection period, number of witnesses and assessors required, and the current requirement for full capacity to determine eligibility for MAiD. Attempting to honour an urgent MAiD request is likely to prolong suffering in those who are imminently dying.

Isolation measures, limitations on visitors and travel restrictions could lead to an increased sense of separation in patients who are nearing end of life and their families, which occurred during the SARS epidemic in 2003.9 Since then, technological advances have made video calling commonplace, which should help alleviate the sense of isolation for many. We suggest that health care facilities offer smartphones, tablets or laptops to patients and provide free Internet connections during the pandemic. However, some patients will not be able to use video calling because of their condition, so social workers and spiritual health professionals should prioritize these individuals for support. In addition, should PPE be available, we suggest that family members be allowed to visit. We should also recognize that the effect of separation will not end when the patient dies and anticipate the need to support family members through their disrupted grief and bereavement.

Patients who are frail, older or have multiple comorbidities are at the highest risk of death from SARS-CoV-2. Many of these patients will not ask for aggressive life-prolonging measures such as mechanical ventilation. Instead, they will prioritize honest communication, having time to say goodbye to loved ones and avoiding being a burden on their family.21 In a situation of resource scarcity, patients and family members may be surprised to learn that they will not be offered life-sustaining measures. This will be a challenging scenario for many physicians, and a sensitive, supportive approach may help reduce the distress of the patient and family (Box 3). However, if they are informed that their chances of surviving critical illness are poor, many will choose not to experience the burdens of intensive care.22 Therefore, when assessing patients who are critically ill with respiratory failure caused by SARS-CoV-2, it will be important for all physicians to ensure that any proposed treatment is clinically indicated and in agreement with patient wishes and expectations (Box 4). The first fatal case of COVID-19 in Quebec was an elderly woman who did not wish to have aggressive interventions. Her decision was made after conversations with the treating team while she was provided with optimal care.23

Equity is an important principle to apply when triaging during a pandemic. At the best of times, people who are structurally vulnerable or who suffer with severe mental illness face substantial challenges in accessing health care in Canada. Patients in need of palliative care and simultaneously living with “deficits in the social determinants of health” have particular difficulty in accessing that care.24 In a pandemic, as our health care system becomes more stressed, inequities will become more pronounced. People facing poverty, discrimination, language barriers and historical trauma are least able to self-advocate and are at a greater disadvantage when facing difficult decisions about resource allocation. These patients are aware of this; studies have shown that they fear not getting access to life-sustaining treatments25 and may be judged as less deserving of care.26 Palliative care thus becomes the compassionate option to counterbalance this inequity.