End-Of-Life Decision Making: The Pandemic’s Reminder of Healthcare Inequality

Old warehouses transformed into emergency makeshift morgues highlight just how enormous the COVID-19 death toll proved to be. With funeral homes unable to take in infected corpses, hospital halls lined with body bags and burial services on hold, mourning remains suspended for families who lost loved ones. Death and dying became an imminent threat rather than a fact of life. 

Yet that threat looms greater for some more than for others. The virus has shown itself to be discriminatory; it disproportionally affects people of color, killing Black Americans at rates double those of white Americans. Despite the virus as a convenient scapegoat, it is important to recognize that it does not act alone; systemic racial and socioeconomic inequality contribute to the public health outcome inequities. Overrepresentation in essential service jobs and densely populated neighborhoods contribute to people of color’s heightened COVID exposure rates. Unhealthy living conditions compound with heightened risk for chronic illness with people of color being 60% more likely to contract diabetes and 40% more likely to be diagnosed with hypertension, two risk factors for COVID complications [9] . Besides a quantification of COVID-19, mortality and infection rates highlight a much deeper problem.

The disparity in infection and mortality rates bring up an often overlooked but nonetheless important aspect of medicine: end-of-life decision making. End-of-life decisions include the advance directive legal documents of a DNI (do not intubate), DNR (do not resuscitate), and a living will (1). These documents are intended to outline an individual’s choices on potentially invasive, but life-saving procedures if they are unable to express their wishes themselves. Intubation, one example of a more common invasive life-saving interventions, involves strong sedatives, or sometimes restraints to stop the patient removing the uncomfortable endotrachael tube. After effects of these procedures can include cognitive impairment and infection (1). Even after intubation with mechanical ventilation, patients may never fully recover, spending the rest of their lives in an expensive extended care facility or rehabilitation center. Individuals may opt to forgo life-saving interventions considering these drawbacks (3). If patients choose not to pursue life-prolonging procedures, they can opt for palliative care, which includes pain reduction and hospice facilities (1). If patient’s do not have an advance directive filed, protocol is to do everything possible to prolong life. Physicians are trained to initiate end-of-life conversations with chronically ill patients as a part of standard healthcare practice (2)

These sensitive discussions are crucial to preserve a patient’s ability to self-determine their medical care. Yet, according to a report by the Economist in 2017, only 27% of older American individuals have their end-of-life wishes legally documented. Behind this broad statistic, racial inequalities can be found after controlling for age and socioeconomic status: 35% of white individuals have filed some form of advance directive, while 15% of non-Hispanic black individuals and only 11% of Hispanics have filed legal documentation of their end-of-life preferences (6). These discrepancies become even more disturbing when considered with data showing that Black and Hispanic individuals have end-of-life decision conversations with loved ones just as often as white individuals do with theirs (6).  Therefore, the discrepancies in rates of advance directive filing are not due to people of color’s lack of concern for end-of-life procedures. 

Furthermore, a National Academy of Medicine (NAM) 2005 analysis found, even after controlling for insurance coverage, age, income and condition severity, that Black Americans receive lower quality healthcare; “… minority persons are less likely than white persons to be given appropriate cardiac care, to receive kidney dialysis or transplants and to receive the best treatments for stroke, cancer or AIDS…some people in the United States were more likely to die from cancer, heart disease and diabetes simply because of their race or ethnicity, not just because they lack access to healthcare” (4). NAM attributes this to majority-white physicians’ implicit bias regarding racial minorities (4). Notably, research confirms that this implicit bias is not overcome by medical training. One example using Implicit Association Testing revealed that physicians who have an implicit bias against people of color are less likely to prescribe pain medication to black patients.

Lower quality healthcare overall translates to lower quality end-of-life care specifically. For terminally ill patients, end-of-life conversations are a standard and important aspect of medical care (2). Physician communication skills in and preparing for conducting sensitive end-of-life conversations are imperative to high quality care for chronically ill patients. Yet, studies show that people of color report lower quality interactions with their doctors when compared to white patients (5). A survey of 1816 patients found that Black Americans rated their interactions with physicians as significantly less cooperative and participatory than white Americans. In addition, in a study of 803 terminally ill patients, Black Americans rated significantly lower quality relationships with their physicians (8). These communication disparities are further highlighted in a study which found that 69% of White Americans reported knowledge of advance care directives while only 12% of black Americans reported the same (7).

Physician-patient relationships serve as the bases for quality care. With consistent discrepancies in the quality of these interactions, end-of-life care is severely impaired for black patients. A lack of awareness of end-of-life options diminishes people of color’s authority over their decisions regarding their own life. COVID-19 underscores this inequality, but it has always existed in the American healthcare system. Medical care professionals should acknowledge their racial biases and how they affect the standard of care they deliver to work to make end-of-life planning accessible and equitable for all patients.

Edited by: Isaac Mordukhovich




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