Community transmission of the coronavirus disease (COVID-19) was first reported in the United States in February 2020 (Centers for Disease Control and Prevention (CDC), 2020a). As of August 2020, the United States has nearly doubled the number of cases and the highest number of deaths compared to any other nation in the world (Johns Hopkins University and Medicine, 2020a). The COVID-19-Associated Hospitalization Surveillance Network (COVID-NET), a population-based surveillance system, has reported hospitalization and mortality rates based on data collected since March 1, 2020 (Centers for Disease Control and Prevention (CDC), 2020b). According to this network, as of August 15, 2020, the overall cumulative hospitalization rate in the U.S. was 151.7 per 100,000 (Centers for Disease Control and Prevention (CDC), 2020b). The rate of hospitalization was highest among adults aged ≥65 (412.9 per 100,000), followed by adults aged 50–64 years (228.1 per 100,000; Centers for Disease Control and Prevention (CDC), 2020b).

Hospitalizations and deaths due to COVID-19 have disproportionately affected populations of color (Centers for Disease Control and Prevention (CDC), 2020b; Moore et al., 2020). Non-Hispanic American Indians or Alaska Natives have COVID-19 hospitalization rates more than five times greater than non-Hispanic Whites; rates among Hispanics or Latinos and non-Hispanic Blacks are just under five times greater than non-Hispanic Whites (Centers for Disease Control and Prevention (CDC), 2020b). Although Blacks (13%) and Hispanics (18%) make up a smaller segment of the U.S. population than non-Hispanic Whites (60%), they have experienced nearly 30 and 40% of COVID-19-related deaths, respectively, compared to non-Hispanic Whites at more than 20% when adjusting for age (Centers for Disease Control and Prevention (CDC), 2020c).

Spikes of new infections, hospitalizations, and deaths are expected in the future, with predictions that the pandemic will continue into 2022 (Center of Infectious Disease Research and Policy [CIDRAP], 2020; Kissler et al., 2020). As the population of the U.S. awaits a vaccination or herd immunity, three outcomes are certain to occur in the near future: more adults will be infected, more will be hospitalized, and more will die from COVID-19 (Johns Hopkins University and Medicine, 2020b).

A new urgency for advance care planning

The COVID-19 pandemic has forced U.S. Americans to view advance care planning (ACP) in a new light. The increased number of hospitalizations and deaths due to COVID-19 have created a new urgency for ACP. Although political and health care leaders are focused on increasing intensive care unit capacity, obtaining needed personal protective equipment, increasing overall hospital capacity, and increasing testing, adults in the U.S., especially older adults and people of color, must realize their increased odds of serious illness and death (Grimm, 2020). Given the abrupt nature of COVID-19 infections and deaths, many of those infected may find it difficult or impossible to complete ACP after being admitted to a hospital. Thus, it is important that all U.S. Americans complete ACP before it is too late.

One thing is certain about ACP—most people do not want to die alone, isolated from family and loved ones (Wakam et al., 2020). Furthermore, most U.S. Americans (80%) prefer to die at home (Stanford School of Medicine, 2020). Unfortunately, most patients who have died of COVID-19 have died alone due to infection control policies and restrictions on visitors in institutional settings (Mulrow et al., 2020; Wakam et al., 2020). Pre-pandemic, the vast majority of deaths in the developed world and high-income countries occurred in institutionalized medical settings (Stanford School of Medicine, 2020; Virdun et al., 2017). The pandemic has exacerbated the likelihood of patients spending their final weeks or days in an institutional setting (Margolies, 2020).

Definition and benefits of advance care planning

One strategy for ensuring that end-of-life preferences and medical care wishes are met is to complete ACP. This involves making decisions in advance about the goals of care, the location of final days, and preferences for treatments and end-of-life care (U.S. National Library of Medicine, 2014). ACP discussions with family and physicians should result in decisions regarding the place of care (e.g., home or hospital), qualifications and training of the health care professionals who will provide the clinical care, and the goals of care (Hui et al., 2014). Specific ACP behaviors include obtaining information on the types of life-sustaining treatments that are available, deciding preferred types of treatment if one should be diagnosed with a life-limited illness, sharing end-of-life wishes with loved ones, and completing advance directives, which are legal documents enabling individuals to plan for and communicate end-of-life wishes (e.g. living will, durable power of attorney for health care), in the event that an individual may not be able to make or communicate such decisions in the future (National Hospice and Palliative Care Organization, 2020).

Completing ACP improves end-of-life medical care for patients by ensuring that patients’ wishes are established, documented, and followed (Detering et al., 2010). It also helps to improve the patient's quality of life at end-of-life and increases the proportion of patients who die at home under hospice care (Bischoff et al., 2013). Engaging in ACP allows patients to make collaborative health care decisions with their health-care providers and family members, gives patients a sense of control over their health-care decisions, reduces futile medical treatment and excess burden on patients and family members, helps to prevent unnecessary prolongation of the dying process, and reduces levels of emotional distress for family members (Coustasse et al., 2008; Vandervoort et al., 2014).

Although ACP has many benefits, many U.S. adults have not done it (Institute of Medicine, 2015). Regarding advance directives specifically, in the U.S., a range of 10–71% of adults has completed an advance directive, with the higher end of that range typically associated with older adults (California Health Care Foundation, 2012; McAfee et al., 2017; National Council on Aging, United Health Care, & USA Today 2014; Silveira et al., 2014). Only about a quarter of U.S. adults and half of U.S. senior adults report having their end-of-life medical wishes in a written document (The Kaiser Family Foundation, 2017). Regarding specific advance directives, a national study of U.S. adults revealed that only 36% of U.S. adults had completed a living will and 32% had completed a durable power of attorney for health care document (McAfee et al., 2017).

Discussing end-of-life wishes with family and loved ones is also a critical component of ACP. In a 2018 national survey of U.S. adults, 92% reported that it was important to talk to loved ones about end-of-life care; however, only 32% had actually done so (The Conversation Project, 2020). Furthermore, studies of U.S. adults show that 41–62% discuss end-of-life wishes with a loved one (California Health Care Foundation, 2012; McAfee et al., 2017; National Council on Aging, United Health Care, & USA Today 2014; The Kaiser Family Foundation, 2017). Even fewer have such discussions with their physicians. For example, a national study found that less than 20% of U.S. adults had discussed their end-of-life medical wishes with their physician (McAfee et al., 2017). The low prevalence of these conversations is likely a reflection of the taboo nature of talking about death in the U.S. Nearly 7 in 10 U.S. adults report that death is a subject that is generally avoided in society (The Kaiser Family Foundation, 2017).

Past research shows that Black and Hispanic populations engage in ACP at lower rates than White populations (Bischoff et al., 2013; McAfee et al., 2017). In one national study, 33% of White individuals had completed all three ACP behaviors including completing a living will, completing a durable power of attorney for health care, and discussing end-of-life wishes with loved ones, compared to 18% of Hispanic and 8% of Black individuals (McAfee et al., 2017).

Barriers to ACP completion for populations of color include institutional racism, lack of access to or infrequent utilization of care services, lack of knowledge, lack of awareness, low health literacy, and lower accessibility to advance directives (Carrion et al., 2013; Cohen et al., 2010; McAfee et al., 2017). For people of color, ACP decision making is often a family-centered process in which family members’ preferences are considered and valued even more than the choices of patients themselves (Mead et al., 2013). Such populations are more likely to consider family preferences and choices compared to White populations who often do not (Bullock, 2011; Hong et al., 2011).

A call to action

Despite all the benefits of ACP and a new urgency to complete it due to the current pandemic, many U.S. adults have not done so. Death education is sorely lacking in the general community. Furthermore, most palliative care and hospice education remains clinically oriented (Stillion & Attig, 2015). Even existing educational programs in the community tend to emphasize the benefits of palliative care and hospice but do not address the broader issues of bereavement, grief, mourning, and how to prepare for death (Stillion & Attig, 2015). Therefore, we recommend four broad action steps that would likely increase the rates of ACP completion in the U.S.