Sep 26, 2022 | Advocacy, Data Collection, Research
Earlier this month, Evermore hosted a conversation with Toni Miles, M.D., Ph.D., a grief and bereavement researcher in Georgia and Morehouse School of Medicine adjunct professor, to discuss the Centers for Disease Control and Prevention’s (CDC) Behavioral Risk Factor Surveillance System (BRFSS) — a health-related survey of adults that measures certain behaviors, such as seatbelt use, smoking, and substance use. [Watch the full conversation here.]
While the BRFSS asks a number of questions about physical and mental health, one thing it doesn’t measure is adult experiences with the death of loved ones and family members. “We count dead people, but we do not count the people who are left behind,” says Miles. “We can’t see bereavement because we don’t count it.”
In a quest to discover the population health effects of death in her home state, Miles conducted a field study in 2019 that piloted three bereavement exposure questions in Georgia’s BRFSS.
As part of her study, Miles asked participants if: 1) they had experienced a death event in the past two years, 2) how many deaths they had experienced, and 3) their relationship to the individual who was lost. The data she collected was striking. [/vc_column_text][vc_video link=”https:///www.youtube.com/watch?v=vRi8AUTzTyo”][vc_column_text]Miles’ work found that, pre-COVID, 45 percent of Georgia adults surveyed had experienced death in the previous two years — with 400,000 people experiencing two or more deaths in that time period. Extrapolating these findings to the overall state population, Miles estimates that 3.7 million adults, out of Georgia’s 8.1 million residents, were recently bereaved.
The survey also revealed a disproportionate burden on African Americans in Georgia, with 58 percent of respondents reporting the death of a loved one.
The survivors of these death events are, themselves, at risk for poor physical health outcomes, premature death, and other adverse consequences that can alter their life course. Miles’ work found that Georgia adults experiencing a family death were at a higher risk of mental health problems, an undermined capacity to work, and binge drinking.
Distinguished researcher and bereavement expert Dr. Toni Miles
“We always talk anecdotally about how bereavement makes people sick — so and so died of a broken heart — but you don’t have the data to make that connection,” says Miles. “BRFSS allows us to make that connection.”
Evermore hopes that more states will add these three bereavement exposure questions to their BRFSS population research because collecting data on bereaved residents could help Americans understand the associated impacts of bereavement and inform and bolster policy on bereavement care.
In 2021, Evermore leveraged Miles’ work, using the U.S. budget process as a catalyst to advance bereavement epidemiology in the BRFSS (read Evermore’s testimony to the Senate Health Appropriations Subcommittee here). Evermore created this avenue by successfully advocating for appropriations language to the U.S. budget that works to standardize the CDC’s measurement of the three bereavement exposure questions. However, implementation of these provisions is not guaranteed.
This is why it is crucial for Americans to voice their position on this issue. Anyone can contact the BRFSS coordinator in their state to advocate for the inclusion of these three questions in future iterations of their state’s survey. If more states begin to adopt and ask these questions, the CDC is more likely to implement them nationwide.
We encourage readers to identify their local coordinator, call them, and explain why these questions are crucial to bereavement care. This is a universal issue — one that disproportionately impacts communities of color — and now is the time for action.
Sep 13, 2022 | Family, Grief, Research
Experiencing the death of a loved one can be one of the most traumatic and painful experiences someone can face in life. Such losses can be overwhelming, resulting in intense and difficult emotions of sadness, emptiness, shock, and despair.
The bereavement process that conjoins grief — the handling of a loved one’s affairs, the navigation of various systems (medical, law enforcement, government benefits, health care) — only adds to the mental distress many families experiences. [Read about the difference between grief and bereavement.]
But grief and bereavement are far more than emotional or mental health experiences. Both processes, bereavement in particular, also have material and practical impacts that can profoundly affect the quality of life — and lifespan — of someone who is grieving the loss of a spouse, parent, child, or sibling.
“The unexpected death of a loved one poses a dual threat to our national well-being. Before the COVID-19 pandemic, Americans reported unexpected deaths to be among the most common major life stressors and the single worst experience of their entire life,” says Evermore founder Joyal Mulheron. “Losing a loved one is not only a personal tragedy, but it casts a long shadow that can extend for decades because it places surviving parents, children, siblings, and spouses at significant risk for impaired health, premature death, and other disadvantages.”
We know that individuals who lose a family member, in particular, are at higher risk of premature death as a result of their loss (when compared to non-bereaved people). This is a medical outcome — not merely a mental health outcome — and one that can and should be prevented.
In a recent study from David Weaver of the University of South Carolina, it was concluded that in the United States today, an estimated two million children under the age of 18 have a mother or father who has died. Other rigorous population-level studies have found that when compared to non-bereaved children, bereaved children experience lower self-esteem, heightened risk of depression, suicide attempts, suicide, and premature death due to any cause.
We know that bereavement is also associated with decreased academic attainment, increased violence and crime, incarceration, self-harm, suicide attempts and completions, and with substance abuse and psychiatric disorders. So, while bereavement does cause mental distress, it also becomes the precipitating event for other emergencies that decrease the health, social, and economic well-being of an individual.
Findings from a research study conducted by Jason Fletcher of Yale University and Marsha Mailick, Jieun Song, and Barbara Wolfe of the University of Wisconsin–Madison concluded that females who have lost a sibling are at increased risk of completing fewer years of school, dropping out of high school, becoming pregnant as a teen, not attending college, and have an average reduction in income of 20 percent.
Bereavement magnifies existing racial inequities. For example, the Indian Health Service reports that American Indians and Alaskan Natives born today will live 5.5 years less than other racial groups in U.S. As a result, families will experience these deaths earlier in life and encounter associated hardships, only compounding and multiplying the impact of bereavement.
Black Americans are also disproportionately impacted by the premature deaths of loved ones. Across the life course, they are three times as likely as White Americans to have two or more family members die by the time they reach the age of 30 — making these communities more vulnerable to negative social and health outcomes for the rest of their lives.
The systems surrounding a grieving and bereaved family should be oriented toward preventing the onset of addiction, disease, or even death for surviving family members, but also preventing other associated health and social outcomes.
Let’s consider the real-world implications of just a single death…
When Alex — a husband, father, and sole income-earner in the family — passes away as the result of an accident, his spouse Bianca is immediately confronted with a slew of practical considerations.
She must make and pay for funeral arrangements, but she no longer has the support of Alex’s income. She’s also on the verge of losing the health care provided by Alex’s employer — for her and her eight-year-old daughter.
Bianca now needs to find a job — while grieving — but may have to work evenings and miss the end of the school day for her eight-year-old daughter Marcella, who is in a state of shock, confusion, and trauma after learning her father won’t be coming home.
Moreover, Marcella doesn’t want to get out of bed, is missing school, and her grades are beginning to decline, for the first time since she started school.
Without Alex’s income, suddenly housing, food, transportation, and health care are all on the line — all at once. This is more than grief. This is a family catastrophe.
This is why people don’t only need support with the emotional side of loss, they also need social and practical support in continuing to live their lives — to pay bills, go to work, provide child care, seek appropriate benefits, navigate burial and funeral plans, and so on.
As a society, we need to change and create policies so children and families can better cope with the instability they face in the aftermath of a death. These policies should be based on quality research and data [see our Facts & Figures] and provide economic support, access to quality health care, and meaningful community support programs for all children and families.
We cannot only attend to families alone, however. We must provide education and resources for our frontline responders who attend to families in the aftermath of a death. This includes first responders — paramedics, firefighters, or law enforcement — employers, clergy, or schools. We need to equip our community leaders with the tools to help stabilize children and families.
This is why our work is centered around advocacy — to The White House and the U.S. Congress. And why we work to educate as many people as possible about the real and numerous impacts grieving and bereaved people experience in this country. And this is why your voice matters too. Join our advocacy network in advancing bereavement care for all.
Resources & Related Reading
Bereavement Facts & Figures
Why is our nation so far behind in grief and bereavement services and policies?
Just How Many People in America Have Lost a Loved One?
The epidemiology of traumatic event exposure worldwide: results from the World Mental Health
Survey Consortium, Benjet et al, 2016.
Parental Mortality and Outcomes among Minor and Adult Children, David Weaver, November 2019
A Sibling Death in the Family: Common and Consequential, Fletcher et al, January 2015.
Sep 6, 2022 | COVID, Data Collection, Federal Government, Grief, Research
Just How Many People In America Have Lost A Loved One?
The Centers for Disease Control and Prevention (CDC) is one of the nation’s most-trusted, science-based sources of data on public health in the United States. For more than 70 years, this government agency has been monitoring the nation’s health landscape and providing guidance to the public on how to prevent and respond to health threats. It collects myraids of data on national health trends, including mortality rates related to homicide, suicide, substance misuse, maternal mortality, accidents, and more. Yet, while it collects how we die, it does not collect who survives these deaths and what the implications are.
With concurrent mortality epidemics touching every neighborhood in America, millions of people have experienced the death of a family or friend, but exactly how many people are impacted? We don’t know. What adverse outcomes do people experience in the aftermath of death? We have to look to academia or to other international registries to better understand the ramifications of losing someone meaningful.
“We all know the saying, ‘what gets measured, gets done,’” says Evermore founder Joyal Mulheron. “Bereavement is a public health concern hiding in plain sight simply because we are not measuring the scale or impact that losing loved ones has on our society.”
For example, to understand how many people have been impacted by COVID-19, we can look at the findings from a research study conducted by Ashton Verdery of Pennsylvania State University, Emily Smith-Greenaway of the University of California at Los Angeles, and Rachel Margolis of the University of Western Ontario. They find that for every one COVID-19 death, approximately nine survivors were impacted by the loss of a grandparent, parent, sibling, spouse, or child. But the study’s authors suggest that this is actually a significant underestimate, and likely more individuals are impacted, on average, by a single death. We also know that family survivors are more at risk for poor physical health outcomes, premature death, and other adverse consequences that can alter their life course.
For COVID-19 alone, more than 9 million individuals lost a loved one to COVID-19, including an estimated 78,000 children who lost a parent. This indicates that a significant portion of the population has been impacted by not only loss and grief, but in many cases by the loss of income and health care benefits (if the deceased individual contributed to household earnings and held a job with insurance). This is why we need sound data collection — to provide a clear picture of the impact in order to shape a federal response.
In order to develop sound policies and practices for supporting loved ones after a death event, our nation requires consistent and reliable data on the prevalence and consequences of death and bereavement. We need to know how many people are impacted by different types of death epidemics so we can see a more accurate picture of the true impact.
“When we lose someone meaningful in our life, it can irrevocably alter our health and our social and economic stability for years, decades, and in some cases, impact our well-being for the rest of our lives,” says Mulheron. “The more we know, the more we can help children and families.”
Collecting statistics on bereaved children, parents, siblings, and spouses could help Americans better understand the associated outcomes and impacts, such as housing and food insecurity, health care coverage loss, educational hardship, incarceration, substance use, suicide attempts, and premature death. These statistics are also crucial in helping us better understand what can be done to support bereaved people.
TONI P. MILES, MD, PHD
In 2021, Evermore made legislative strides, using the U.S. budget process as a vehicle to advance CDC data collection. Using work piloted by Toni Miles, M.D., PhD, formerly of the University of Georgia, Evermore advocated for the inclusion of bereavement epidemiology in CDC’s Behavioral Risk Factor Surveillance Survey (BRFSS). BRFSS is the nation’s premier survey tool to collect data from 400,000 adults living in the 50 states, the District of Columbia, and three U.S. territories. It is the largest continuously conducted health survey in the world.
Dr. Miles’ work preceded the COVID-19 pandemic, but found that 45 percent of Georgians — or 3.7 million Georgian residents — were bereaved in the last two years. She found that bereavement disproportionately impacts African American families with 58 percent reporting a recent loss.
“Dr. Miles’ work is very important because it enables policymakers to narrow and focus solutions to help bereaved families,” says Mulheron. “For example, Dr. Miles’ preliminary evidence found that 53 percent of those with a recent loss were out of work. This demonstrates the need for more compassionate employer policies, but also the need for Congress to add death of a loved one as a qualifying event to the Family Medical Leave Act.”
Ultimately, the budget provision passed Congress, but with no funding for CDC to include bereavement as a measurement on BRFSS. In budgetary legislative language, Congress is encouraging CDC to collect bereavement data, but it is an unfunded mandate that CDC is not obligated to follow.
“Still, this is a legislative victory and CDC is beginning to pay attention to bereavement and its impact,” says Mulheron. “As a nation we are beginning to recognize that death is not simply a mental health issue. It creates vast uncertainty for an individual’s health, social, and economic well-being. We will continue to fight for America’s families. It’ll take time, but we will get there.”
Additional resources
Tracking the reach of COVID-19 kin loss with a bereavement multiplier applied to the United States, Ashton Verdery, PhD, Emily Smith-Greenaway, PhD, Rachel Margolis, PhD
Estimates and Projections of COVID-19 and Parental Death in the US, Rachel Kidman, PhD, Rachel Margolis, PhD, Ashton Verdery, PhD, Emily Smith-Greenaway, PhD
Evermore’s Bereavement Facts & Figures
