Inequities in end-of-life care have been exacerbated by the COVID-19 pandemic, but have yet to receive the same level of attention as some other health disparities brought to the fore recently.
Quality end-of-life care is focused on reducing human suffering and aiding patients in receiving support during the dying process.
Traditionally, poor quality end-of-life care involves the overtreatment of patients, as in the case of continuing to treat incurable cancer aggressively. However, COVID-19 has introduced new challenges in achieving quality care at the end of life. Specifically, it is now more challenging to reduce human suffering at the end of life because of limitations in providing access to two critical resources: (1) medical care that can relieve physical suffering in the dying process and (2) support, such as loved ones, as well as needed psychological, spiritual, and physical support to cope with the existential threat of dying. COVID-19 has made access to both of these a greater challenge for underrepresented minorities.
Access to support has become a novel challenge in hospital systems amid COVID-19 due primarily to limitations around hospital visitors. COVID-19 positive patients cannot have any visitors in the hospital, leaving them truly alone and suffering in their illness and often in their death. Even among patients hospitalized for other medical reasons, they are often restricted to no visitors, or, at most, one. These restricted visitations are typically reserved for patients at the end-of-life.
Many hospitalized patients now rely on digital technologies, such as smart devices, to receive the critical social support needed in their final days. Yet, many low income households, which are disproportionately comprised of underserved minorities, lack access to internet or are unable to utilize video conferencing tools and software. These digital inequalities, which existed prior to COVID-19, now directly impact the quality of end-of-life care patients receive. Without proper access to these devices, the connections that power them, and the knowledge needed to navigate the software necessary to use them, underserved populations are more likely to suffer and die alone or with very little social support.
Access to the medical care needed to manage physical suffering, whether due to COVID-19 or other health issues, is also less readily available among dying underserved minorities. A case example includes the inequities in access to care that existed at the height of the pandemic in New York City.
As the New York Times reported back in May, a hospital in Elmhurst, Queens, which primarily serves a minority patient population, was overrun and out of beds, while nearby hospitals in wealthier neighborhoods of Manhattan had “plenty of space.”
Although this was labeled a “patient management issue,” it was likely fueled by several factors directly tied to health inequities. First, Elmhurst’s catchment area was disproportionately affected by COVID-19, with higher rates of infection and mortality. Second, Elmhurst Hospital had fewer resources than wealthier hospitals in the city and thus was less equipped to deal with the oncoming surge of COVID-19 cases. Finally, Elmhurst Hospital benefitted less from the many volunteers who came to assist NYC hospitals. These disparities in access to health care during the surge of COVID-19 meant that those dying from COVID-19 or other ailments were ultimately less likely to receive care and as a result may have been less likely to receive medical and supportive care as they were dying.
The systemic health inequities that fuel higher rates of COVID-19 infection and death among the most vulnerable patient populations in the U.S. are tragic and must be addressed.
That those most likely to die are also less likely to receive the critical care needed to cope with dying is doubly cruel. These types of poor dying experiences, which are counter to the quality end-of-life care the profession should strive for, can cause “such profound physical and emotional distress that patients face the disintegration of their soul.” Thus, health inequities due to COVID-19 affect not only patients’ infection rates, complication rates, and death rates, but also their rates of suffering at the end of life.
Certainly, many Americans beyond just underserved populations are dying worse deaths due to COVID-19. The lack of, or limited, in-person access to support negatively affects all who are dying in hospitals. Creative solutions are needed to overcome these extreme limitations. But the current inequities in our health care system pose a major ethical dilemma. Not only are underserved minorities statistically more likely to be dying in the hospital, but they are less likely to receive any form of support or care needed in these final moments of life.
The first step to ameliorate these ethical dilemmas is to acknowledge that they exist. It is critical to be aware that underserved communities suffer more from lack of access to resources and support at a systems level. Distribution of wealth and resources, as well as improvements in access to basic resources, such as digital devices, are critical in this period of rethinking what high quality of end-of-life care looks like in hospital settings. We cannot leave the most vulnerable among us behind, especially in their final precious moments of life.
