Death during COVID-19: Redefining terminal illness

By Samantha W. Stein and Justin T. Clapp

IDENTIFYING A GAP IN TRIAGE MODELS

As floodwaters rose and resources dwindled inside Memorial Medical Center in the days following Hurricane Katrina, patient Emmett Everett pleaded with nurses: “Don’t let them leave me behind.” Everett sought to be evacuated to the safety of another hospital alongside nearly 2,000 other patients, families, and staff whose lives were compromised by the quickly deteriorating conditions inside Memorial. However, Everett was not evacuated. As the clinicians staffing the hospital later claimed, he could not be. With resources scarce, death was inevitable for some; it was just a matter of who and how. On September 11, 2005, mortuary workers found Everett and 44 other persons deceased and decomposing inside Memorial. Upon toxicology screening of 41 bodies, 23 tested positive for potentially deadly pharmaceutical compounds, suggesting that clinicians may have deliberately administered lethal doses to patients triaged as low priority.

Given legal restrictions around hastening death, in 2006, Louisiana’s State Attorney General prompted an investigation of several Memorial clinicians responsible for the patients discovered dead with abnormal toxicology results. Amidst this investigation, Everett’s pleas became iconic in a charged national conversation about euthanasia, emergency preparedness, and the ethical and legal culpability of clinicians acting in the face of disaster. Under conditions of widespread duress, what does it mean to deliver healthcare when medical technology is not enough, when there is not enough medical technology? How might the boundaries of terminal illness and palliative care be redefined to reduce suffering in the face of an inevitably limited capacity to save life? In what ways should resource shortages inflect our definition of terminal illness and inform the ethical imperatives to provide death with dignity in times of crisis?

These questions seem to have lost their potency in the United States over the decade and a half since Hurricane Katrina, surfacing only rarely in discussions about how to provide care during the current COVID-19 outbreak. Bioethicists, policymakers, and hospital administrations have rushed to propose triage systems for implementation during the pandemic, asking: Who gets resources and who does not? Meanwhile, the question of how to humanely care for patients triaged as low priority remains insufficiently addressed.

The majority of COVID-19 triage models relegate the sickest and the healthiest to low-priority status, meaning that such patients are least likely to receive ventilators. Without supportive care or hastened death for critically ill patients deemed low priority, death by COVID-19 proves grisly. As a Louisiana respiratory therapist described, “[Patients] are essentially drowning in their own blood and fluids because their lungs are so full.”

 

RETHINKING PALLIATIVE CARE PLANS

Some participants in the global discourse around COVID-19 triage have stressed that palliative or supportive care is a critical element of any triage plan. Their definition of palliative care is limited to medical and spiritual practices intended to relieve pain and suffering without explicitly seeking to induce death as a means of alleviation. With supportive care such as painkillers, sedatives, and fever reducers, among other interventions intended to reduce discomfort, patients will be less attuned to their own drowning. Such practices of ‘letting die with supportive care’ may be categorized as passive euthanasia, which is legal across the United States and a standard part of medicine during ordinary times. However, these are not ordinary times, and the current palliative care/hospice infrastructure in many western nations appears unable to accommodate masses of COVID-19 patients.

The COVID-19 pandemic implores us to pursue thoughtful conversations about what it means to deliver care to patients deemed low priority during crisis, specifically when critical and palliative care infrastructure is so profoundly strained. As the precipice of the COVID-19 pandemic’s first wave challenges the world we know, preemptive conversations about death with dignity enable us to be creative with presently available mechanisms for understanding and reducing suffering, despite current legal restrictions on hastening death. In the short term, these transparent conversations can confront the anxieties of both patients concerned about the agony of drowning in the absence of available ventilators and clinicians apprehensive about how to legally and ethically support patients facing imminent death. In anticipation of future instances of medical duress complicated by resource shortage, these conversations can catalyze a regulatory shift on how we address suffering, intensifying pressures to redefine the scope of eligibility for physician-assisted death (PAD).

 

REDEFINING THE SCOPE OF ELIGIBILITY FOR PHYSICIAN ASSISTED DEATH

Unlike death in the presence or absence of palliative care, PAD – which refers to the active administration of lethal pharmaceuticals to patients who expressly indicate a desire to die – seeks to terminate life prior to the immense discomfort that can be brought on by end-stage disease. Today, PAD is legal (to varying degrees) in only ten U.S. jurisdictions, where it is heavily regulated. To be eligible for PAD, patients must have been diagnosed with a terminal illness, have a prognosis of less than six months, and submit a combination of oral and written requests for assistance with death to their physicians, among other criteria. In a situation where a healthcare system’s ability to provide palliative care is stretched thin, PAD offers a relatively humane alternative to death by protracted physiologic deterioration.

In the case of COVID-19, PAD could provide a less painful and drawn-out alternative to pneumonic death – for both patients and their families. However, the stringent requirements that regulate PAD eligibility preclude nearly all critically ill low-triage-priority COVID-19 patients from the legal means to hasten death. While in an ideal world, policymakers, clinicians, and bioethicists would come together to pursue emergency legislation addressing use of PAD in the setting of the COVID-19 pandemic, such swift political organization is unrealistic. Considerate of current political circumstances, we should capitalize on the urgency of the COVID-19 situation to lobby for a shift in regulation so that clinicians and patients alike may have the reassurance of minimal suffering and limited legal repercussions in future situations of duress.

When reconsidering PAD eligibility requirements, it is vital to understand that access to healthcare can determine whether an illness is terminal. While COVID-19 is rarely a fatal illness for younger patients without comorbidities in regions with adequate healthcare infrastructure, for the elderly and those with pre-existing conditions in places with resource shortages, COVID-19 means death for a significantly greater percentage of patients. Disparities in mortality rates across regions, controlled for age and pre-existing conditions, suggest that resource shortages may exacerbate mortality rates. Accordingly, resource shortages should be heavily accounted for when trying to fit the logics of a pandemic into legal frameworks for assessing the right to die in ordinary times. Perhaps such shortages warrant considering COVID-19 and other illnesses – faced in the absence of lifesaving and/or palliative care resources – as terminal illness. Patients diagnosed with terminal illness should then have access to death with dignity.

 

CALL TO ACTION

To neglect discussions about what it means to care for persons facing imminent death in resource-depleted environments is to in effect abandon patients and the ethical obligations of medicine to preserve dignity and reduce suffering. We let the need for a major shift in PAD legislation slip into the political backdrop following Hurricane Katrina, and COVID-19 bears the hallmark of this negligence. This pandemic is crucial for moving the needle on suffering in anticipation of future duress.

 

Authors: Samantha W. Stein¹ & Justin T. Clapp²

Affiliations:

¹ Department of History and Sociology of Science, University of Pennsylvania; Department of Anthropology, University of California, Los Angeles

² Department of Anesthesiology & Critical Care, University of Pennsylvania Perelman School of Medicine

Competing interests: The authors have no competing interests to declare.

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