Finding Support for COVID-19 Family Caregivers: A Brief Look at Public Health Rhetoric

By Mark Polk

Article submitted December 2020

The Centers for Disease Control and Prevention (CDC) report that “[a]mong U.S. COVID-19 cases reported January 22–May 30, 2020, overall the proportion of people who were hospitalized was 14%.”¹ Indeed, many patients recovered—and continue to recover—not in a hospital but in their homes, supported by provisional caregivers: family, friends, and otherwise loved ones. Home recovery, however, is not synonymous with easy recovery; a fact checking report indicates that “nearly 10,000 people have died in their home due to COVID-19 as of Sept. 12, according to the provisional death count from the Centers for Disease Control and Prevention.”² The onset of the pandemic, therefore, has transformed the American home into a sanctuary: the site of private healing and loss, void of the intrusion—and protection—inherent to the clinical setting.

The material form of such protection—masks, gloves, gowns, and other personal protective equipment (PPE)—has not been in abundant supply. In March, the World Health Organization (WHO) released a statement to warn that healthcare workers were at risk of being “dangerously ill-equipped” if hoarding, supply chain shortcomings, and a slate of other factors persisted.³ Accordingly, the CDC advises that “surgical masks and N95 respirators are critical supplies that should be reserved for healthcare workers and other first responders.”⁴ This stipulation, a paradigm of the CDC’s public messaging, has dismissed family members to a subordinate tier of caregivers. Still, these caregivers press forward without government-sanctioned PPE, for their obligation is not professional but personal—not ethical but moral. To add to this burden, the rhetoric coming from public health authorities—largely as a result of the precarious circumstances into which the pandemic forces them—does little to wane confusion or show support for family caregivers, a concern particularly salient to this era of heightened media intake.⁵

Unlike the coronavirus, the provision of care for family members is not particularly novel to the American populace. For instance, the layperson—armed with the timeless adage of “rest and plenty of fluids”⁶—is typically familiar enough with influenza to help others recover without professional care. In fact, the “CDC estimates that the burden of illness during the 2018–2019 season included an estimated 35.5 million people getting sick with influenza,” with only “490,600 [1.38%] hospitalizations”⁷ However, the WHO reveals that characteristics such as transmission and mortality differ between influenza and COVID-19.⁸ It appears, then, that the existing viral knowledge base of family caregivers may translate poorly to the current crisis, prompting these family caregivers to turn to public health authorities for potentially life saving instruction.

The CDC—the United States’ flagship public health authority—provides such instruction through online publications. In “Caring for Someone Sick,” for instance, the CDC offers a succinct list of “emergency warning signs,” ending with the caveat that “[t]his list is not all possible symptoms” and that readers should “call [their] medical provider for any other symptoms that are severe or concerning to [them].”⁹ Severe or concerning, though, are subjective terms. A family accustomed to coronary artery disease, for example, has a perception distinct from that of a family that has not. The former may discount an abnormally high blood pressure reading as a run-of-the-mill hiccup (perhaps a physical reminder to return to the prescribed drug regimen), whereas the latter may wonder whether this anomaly is related to the looming, confusing health threat. Even after months of research and living through the pandemic, it is difficult to offer conclusive guidance. The uncertainty shrouding the pandemic, then, has forced the CDC to leave discretion—and responsibility—to the family caregiver.

In New York, Governor Andrew Cuomo’s remarks at a November 18 press conference caught public attention after he used a peculiar analogy: “And just to make it very simple, if you socially distance and you wore a mask and you were smart, none of this would be a problem. It's all self-imposed. It's all self-imposed. If you didn't eat the cheesecake, you wouldn't have a weight problem. It's all self-imposed.”¹⁰ Though the governor is correct in that social distancing and mask wearing are fundamental components of the pandemic response, and though his comments were targeting those who disregard public guidance and thereby contribute to the spread of the virus, it is still unsettling to hear that “It’s all self-imposed” not once, not twice, but three times.

It is not all self-imposed. The CDC advises that family caregivers (and otherwise “caregivers in non-healthcare settings”) should themselves quarantine.9 Therefore, the infection of an individual is in effect the infection of a household, which may make it difficult if not impossible for that household to continue to work and to perform essential errands. While the governor was duly emphasizing the importance of abiding by restrictions—and while it is not fair to the governor to take a mere few words out of the context of his entire remarks—it is nonetheless disconcerting that a family caregiver may scroll through a news or social media feed and feel chastised, not supported. While each individual’s actions do contribute (either positively or negatively) to the containment of COVID-19, it is essential to recognize that not all individuals have the tools that they need to simultaneously support both their family and the public health effort.

While these are only two examples, they demonstrate the pervasive influence of COVID-19 on public health rhetoric. Whether it is due to the overwhelming uncertainty behind the biology of the virus or the frustration that leaders feel when the public does not comply with their recommendations, family caregivers find themselves receiving the short end of the stick. Going forward, it would be prudent for authorities—no matter the circumstances that they find themselves in—to carefully consider whether they are sufficiently acknowledging the critical role that family caregivers play. Still, the case of the CDC’s guidance of symptoms reveals that sometimes there is just not enough information—that rhetoric can not heal all wounds. Therefore, to even better support family caregivers, public health authorities should consider more substantive changes, such as ensuring that family caregivers have access to the PPE that they need to care for their loved ones safely.

About the author

Mark Polk is an undergraduate student at Harvard University and an editor for the Harvard Health Policy Review.

References

1. The Centers for Disease Control and Prevention. Interim Clinical Guidance for Management of Patients with Confirmed Coronavirus Disease (COVID-19) [Internet]. Centers for Disease Control and Prevention; 2020 [updated 3 Nov 2020; cited 4 Dec 2020]. Available from: https://www.cdc.gov/coronavirus/2019-ncov/hcp/clinical-guidance-management-patients.html.

2. Carlin, Sean. Nearly 10,000 COVID-19 Victims Died at Home [Internet]. FactCheck.org; 22 Sep 2020; [cited 24 Oct 2020]. Available from: https://www.factcheck.org/2020/09/nearly-10000-covid-19-victims-died-at-home/.

3. World Health Organization. Shortage of Personal Protective Equipment Endangering Health Workers Worldwide [Internet]. World Health Organization; 3 Mar 2020 [cited 17 Oct 2020]. Available from: https://www.who.int/news/item/03-03-2020-shortage-of-personal-protective-equipment-endangering-health-workers-worldwide.

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7. Centers for Disease Control and Prevention. Estimated Influenza Illnesses, Medical Visits, Hospitalizations, and Deaths in the United States — 2018–2019 Influenza Season [Internet]. Centers for Disease Control and Prevention; [updated 8 Jan 2020; cited 11 Nov 2020]. Available from: https://www.cdc.gov/flu/about/burden/2018-2019.html.

8. World Health Organization. Coronavirus Disease (COVID-19): Similarities and Differences with Influenza [Internet]. World Health Organization; 17 Mar 2020 [cited 11 Nov 2020]. Available from: https://www.who.int/emergencies/diseases/novel-coronavirus-2019/question-and-answers-hub/q-a-detail/coronavirus-disease-covid-19-similarities-and-differences-with-influenza.

9. Centers for Disease Control and Prevention. Caring for Someone Sick at Home [Internet]. Centers for Disease Control and Prevention; 2020 [updated 2 Dec 2020; cited 11 Nov 2020]. Available from: https://www.cdc.gov/coronavirus/2019-ncov/if-you-are-sick/care-for-someone.html.

10. Cuomo, Andrew M. Video, Audio, Photos & Rush Transcript: Governor Cuomo Announces Updated COVID-19 Micro-Cluster Focus Zones [Internet]. Albany (NY): Governor’s Press Office; 18 Nov 2020 [cited 21 Nov 2020]. Available: https://www.governor.ny.gov/news/video-audio-photos-rush-transcript-governor-cuomo-announces-updated-covid-19-micro-cluster.