Finally receiving a diagnosis from a doctor that explains your previously unexplainable symptoms can often bring about feelings of relief. Giving it a name usually gives it a trajectory, a course of treatment, a plan of action, and predictable outcomes. The patient’s questions have answers, so even the label of a chronic health condition with no cure can offer a sense of peace that the preceding uncertainty had obstructed. But this year, the novel coronavirus or COVID-19 and its diagnosis has offered its targets no such comfort. The insidious nature of its arrival in the United States has left health practitioners, pathologists, epidemiologists, and other public health experts perplexed in their efforts to slow the spread of the virus and to also advise the general public on what can be expected of this disease.
What is anticipatory grief?
The fear of sickness, untimely death or the loss of loved ones have compelled many of us to go to sometimes difficult preventative measures, including but not limited to social distancing, incessant handwashing, the wearing of masks in public spaces, and engaging in non-essential paid work from home. It’s a common quip these days to ask “who would have thought…?” These are extraordinary times, and our vulnerabilities as individuals and as a nation are evident, as the world is at the mercy of an invisible microbe. We’ve worried about what the next month would bring, who would be diagnosed, who would die. Anxiety, sadness, and distress caused by the fear of a potential, impending loss of great significance is known as anticipatory grief. We are expecting the loss, or accepting that it is likely to happen. We imagine what the loss will be like, of a loved one or of our own lives. We rehearse our reactions to it. We worry about the aftermath. What would I do without them? Will they be ok without me?
How do experiences with anticipatory grief vary?
Experiences with anticipatory grief vary just as widely as the experiences with typical grief. They are influenced by extrinsic factors like cultural context (i.e. country of origin, family dynamics), socioeconomic status, or history; as well as intrinsic factors, such as personal belief systems, self-efficacy, age, or personality. In the U.S., people of color experience inaccessible healthcare more often than their White counterparts. Therefore, it may be reasonable to assume that a risk factor for anticipating grief is having an ethnic minority status. In other words, do the trepidations related to anticipating loss impact people of color more? The unfortunate irony of this possible phenomenon is that that the sources of support and financial security that would promote overall well-being during an event like a pandemic are also evasive for ethnic minorities. In addition, people of color are less likely to seek psychological support from trained mental health professionals – especially men, although they are overall more likely to rely on religious and spiritual mechanisms of emotional support.
How does this relate to the past healthcare experiences of people of color?
Positive outcomes related to anticipatory grief – or those outcomes that may result from being forewarned of a loss – are the development of the last will and testament and the living will or advanced directive. Whites are twice as likely to have planned for end-of-life care than Blacks. This is multifaceted. For instance, in certain African American communities, mistrust in the healthcare system is rooted in histories of segregated and unequal treatment, unethical and inhumane experimentation, and systemic racism that minimized the Black body as inferior and the Black voice as immaterial. Even in 2020, plans to test potential COVID-19 vaccines on South Africans were regarded as racist and unfortunate remnants of colonialism. As a result, Black self-advocacy in the healthcare system has largely been muted or amplified, with some medical practitioners allowing for their biased assumptions and stereotypes to prevail or certain Black patients adamantly speaking up for their rights to life-sustaining interventions and culturally sensitive treatment. Clinicians in health and human services fields should be aware from culturally sensitive perspectives that the propensity for an overflow of emotions in the COVID-19 era may disproportionately impact black and brown communities – even if the virus is not yet present in their lives. Because while restrictions have be lightened for social interaction, travel, and business operations in Pennsylvania, on October 27th the PA Department of Health indicated one of its highest single day recordings of infections on record – 2,571. There is still much uncertainty, even as we head into a new flu season.
The role of continued uncertainty and potential long-term health impacts of COVID-19
Early on in the pandemic, we learned that the coronavirus was especially precarious for certain populations of people, particularly the elderly and individuals with certain pre-existing health conditions. According to the Centers for Disease Control (CDC), as of October 23rd in the U.S., we’ve lost 222,447 lives to COVID-19 but have had over 8 million known cases. That’s approximately 2.8% of lives lost thus far. Based on established knowledge of the family of coronaviruses, widespread human loss of life has not been the chief concern. But uncontrolled spread of the disease would overwhelm hospital systems and healthcare providers to points beyond manageability and also negatively impact healthcare access for non-COVID patients needing life-saving and life-sustaining interventions. But another important implication of this virus is the fact that not all survivors are walking away unscathed. There are a number of chronic health conditions that survivors of COVID-19 have developed including damage to the heart muscle, scarred lung tissue, strokes, seizures, and increased susceptibility to the development of Alzheimer’s disease. This is in stark contrast to influenza and other respiratory conditions, and this is not an exhaustive list. Researchers are still learning about the possible long-term consequences. This is morbidity. The potential of lasting side-effects of the infection can be disabling, as they impact the capacity to independently carry out the essential functions of daily life (work, school, hygiene, nutrition, etc.).
Further insight into the mental health implications of the pandemic are needed – through a grief lens
The research is still nascent, but as with death rates, ethnicity plays a role in COVID-19 morbidity. The correlation between ethnic minority status and poor health outcomes related to COVID-19 is being established and underscores the shortfalls of our racialized health care system in the United States – even when socioeconomic status is not a factor. Further insight into the mental health implications of the pandemic are needed from a grief perspective. Experiences within the first four of its five stages – denial, anger, bargaining, depression, and acceptance, can include maladaptive behaviors and poor coping mechanisms that are outward expressions of inward tumult. A few examples include:
- Refusal to engage in conversations about COVID-19 (re: testing, wearing protective gear, a positive diagnosis of a loved one, infection rates, its existence as a real disease or its threat)
- Mood shifts toward persistent resentment or rage regarding COVID-19 (i.e. being “mad at the world,” having hostile attitudes toward those who are perceived to carry blame)
- Feeling overly anxious, powerless, or worrisome about what will or might happen
- Being overcome with sadness, lacking motivation, insomnia, or a lack of appetite – because of the unknown, social distancing, the economic recession, or empathy fatigue
Do these mental health symptoms disproportionately impact ethnic minorities as we have seen is the case with physiological health symptoms? This is an area for future research and a necessary opportunity to inform practice. The use of mental health support services over the last several months has been surprisingly high, considering therapists have largely shifted to providing services virtually . A combination of increases in substance use , depression and anxiety, and domestic violence have contributed to this. As clinicians and researchers in the era of COVID-19, we have been thrust into the unknown and tasked with trying to be steps ahead of an unfamiliar threat.
It can be difficult to know what to anticipate. But an important initial step is for clinicians to educate their clients and reframe grief as an ordeal that does not only follow death, but more thoroughly can precede death and other types of loss. As a type of grief-informed care, mental health professionals must use insight to see what is not visible, to hear what is unsaid, and to encourage client reflection. And learning about the cultural nuances related to the process of grieving while also treating clients as individuals is an important yet intricate skill that can prevent us from making inaccurate assumptions about client experiences. It is widespread knowledge that ethnic minorities are subject to COVID-19 in ways that the majority is not. Let us explore the probability that some of our clients and patients are anticipating grief, with race and ethnicity as its repository.
If you or someone that you know may be experiencing anticipatory grief, click here to find local mental health services in Pennsylvania.