Drastic changes in the practice of end-of-life care during the COVID-19 pandemic

Abstract

This article discusses drastic changes in the practice of end-of-life care during the COVID-19 pandemic. It reviews the ethical dilemmas of individual autonomy versus societal justice, human beneficence versus public health non-maleficence that arose during the pandemic due to prolonged, high acutity,= critical illness in the setting of a highly contageous respiratory virus, protective personal equipment shortages,m crisis standards of care to distribute scarce medical resources, and changes in interactions between treating clinicians, patients, and visitors. The lessons learned during the pandemic response will directly inform and impact the appraoch to future pandemic events.

COVID-19, the syndrome caused by the SARS-CoV-2 virus, radically impacted end-of-life (EOL) care. The lay public and healthcare professionals both confronted stark realities inside and outside the hospital. Early in the pandemic, the media discussed issues previously confined to academic medical ethics, such as resource allocation and utilitarianism [1,2]. The reality of employing dispassionate triage to allocate scarce resources rather than treating patients on a first-come-first-served basis reached the public's consciousness. Later, as numbers grew and the first wave of deaths came, the public witnessed patients and families saying goodbye to dying loved ones over the phone and video calls, not at the bedside holding their hands. In the hospital, we faced new tensions between traditional ethical principles - individual autonomy versus societal justice, human beneficence versus public health non-maleficence. Many hospital systems deployed multidisciplinary teams to help ease the burdens of previously unimagined decisions. Other times, however, individual physicians, advanced practice providers (APPs), nurses, respiratory therapists, and the host of frontline healthcare workers braved this new landscape on their own, just trying to make the best decisions possible for the patients in front of them and those yet to arrive. The impact of COVID-19 on EOL care started in the field and continued through all phases of hospitalization.

As regional case numbers rose on both coasts of the United States and depleted inpatient capacity reserves, utilitarianism in the prehospital setting overrode traditional deference to autonomy. Outpatient physicians caring for patients with chronic, life-limiting illnesses unlikely to benefit from measures like intubation, mechanical ventilation, or even hospitalization sat down for frank conversations about EOL care and the prospects these patients wouldn't be allocated critical care resources [3]. Emergency Medical Services (EMS) administrators and medical directors instructed their pre-hospital medicine crews to preserve oxygen supplies by limiting administration to moderate and severely hypoxic patients [4]. Further, while pre-hospital termination of resuscitation and death pronouncement protocols had been in place for years, they needed to be reinforced to ensure EMS crews only transported the most salvageable patients following cardiac arrests or traumatic injuries [5]. These measures were needed to preserve emergency response capacity and pre-hospital resources and reduce the time EMS crews waited to offload their patients in overrun emergency departments (ED).

In the backs of ambulances and confined spaces of the ED, patients with COVID-19 represented not only those who deserved our best care but also primary vectors through which healthcare personnel could contract the disease themselves, particularly before the December 2020 COVID-19 vaccine emergency use authorization. Personal protective equipment (PPE) represented the best hope for clinicians at the bedside to avoid contracting and spreading the disease, especially during life-saving but aerosol-generating procedures like applying non-invasive mechanical ventilation, endotracheal intubation, and cardiopulmonary resuscitation. Early on, stocks of PPE were rapidly depleted, and hospital systems and states were left to fend for themselves to obtain the proper equipment. Indeed, general public and private business donations served as a lifeline for institutions that couldn't find PPE. The PPE shortage interfaced with EOL for patients in the ED and the intensive care unit (ICU) because it contributed to hospital systems closing their doors to general visitation, keeping the patient's family and loved ones at home. Hospitals couldn't spare the PPE to protect uninfected visitors, and they couldn't risk infected visitors degrading their COVID-19 response by infecting staff.

The PPE crisis impacted rescue and resuscitation. On the fly, emergency medicine physicians, anesthesiologists, and intensivists developed novel intubation protocols and improvised barriers to mitigate their risk of exposure while managing the airways patients in the context of COVID-19. One of the central tenants included planning airway management. But cardiac arrests represent the ultimate unplanned patient decline. Because of the need for near immediate response and the physicality of cardiopulmonary resuscitation (CPR), PPE integrity was suspect even in the best of circumstances. Simulated CPR demonstrated the risk of rescuer contamination [6]. Further, several case series emerged showing the survival rate for patients with COVID-19 who experience a cardiac arrest was frighteningly low [[7], [8], [9]]. The balance between offering rescue therapies to patients and the risk to caregivers shifted. As a result, some healthcare systems were publically candid about their intent to withhold CPR during inpatient cardiac arrests during the crisis [10,11].

As admission numbers climbed, attention turned to the capacity of healthcare systems to continue admitting localized surges of patients. The average length of stay for patients admitted to the floor with COVID-19 is reported as six days, while those admitted to the ICU had a 15 day mean length of stay [12]. However, patients with severe acute respiratory distress syndrome care requiring high flow nasal cannula or intubation with subsequent therapeutic paralysis and proning could see lengths of stay measured on the order of several months. Some states regionalized their resources to attempt to find unoccupied beds and ventilators [13]. However, the necessity to plan for instances where the case needs far outstripped resources was manifest. Some states published state-wide plans for allocation of scarce resources or “crisis standards of care” guidelines to establish uniformity and address the potential for exacerbating healthcare care inequities [[14], [15], [16]]. The guidelines envisioned scenarios where patients, based on their severity of illness or presence of conditions with a severely limited life expectancy, would be triaged away from critical care resources and provided with comfort measures only. Further, patients already admitted to the ICU but worsening despite invasive critical care support would be re-evaluated and potentially removed from that support if regional authorities enacted crisis standards of care. The guidance issued often relied on using pre-existing conditions and estimates of life expectancy. However, the published guidance risks disproportionately impacting disadvantaged communities because of historic and ongoing inequities in social determinants of health [17].

Between the potential for healthcare teams to unilaterally not offer CPR, planning for crisis standards of care, and the increased occupancy of both ICU beds and ventilators, the need for early and candid goals of care conversations intensified. End-of-life care and difficult discussions had to be taken on by all clinical staff. Organizations dedicated to communication skills for severe and life-limiting illnesses created online tools to facilitate goals of care discussions, including disclosures that a patient would be triaged away from critical care resources due to crisis standards of care [18].

Because of the previously mentioned visitation restrictions, the forum for these conversations shifted from physical presence at the bedside to telepresence over phone or video chat services. Centering hospital system safety and capacity over the optimal patient and family-centered care jarred and unmoored many seasoned healthcare workers. For the most part, these technologies held families and loved ones at an unwanted distance. In significant ways, the physical separation heightened the emotional intensity clinicians faced when serving as the medium through which families saw and interacted with patients, many of whom were intubated or unresponsive. Indeed, holding a phone or a tablet, we bore witness to moments previously held without staff, behind drawn curtains or shut doors when families and patients gathered together in person. The sorrow seemed more profound and clinical improvement and increased hope attenuated when delivered electronically. Perhaps the most missed element of a family-healthcare team relationship was the trust and mutual respect built over hours of interaction during traditional visitation. Reliance on technology introduced the possibility of exacerbating pre-existing inequities in communities with less access to and less familiarity with digital communication and marginalizing patients and families who spoke languages other than English. As the pandemic continued, the ability of patients, caregivers, and staff to leverage telecommunication to connect families improved, and telehealth discussions with families and surrogate decision-makers are likely to continue for the foreseeable future.

Globally, COVID-19 continues to strain physical and emotional healthcare resources. For the first time in modern critical care history in the United States, the pandemic forced values of autonomy and beneficence to yield to justice, and EOL care had to transform accordingly. Resource limitations changed the urgency and stakes of critical conversations that traditionally occurred over days and usually in person. The scale of the disaster meant that clinicians using critical care resources had to become more comfortable with palliation in different environments and more carefully consider the appropriateness in care during an acute patient decline. As of this writing, COVID-19 has claimed 4.3 million lives globally and over 600,000 lives in the United States [19,20]. One way of honoring those who died will be learning the lessons taught by the crisis in EOL care and improving how we as a society and individual clinicians approach these issues in future patients.

The others report no conflict of interest or have any financial disclosures.