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Federal Government Requests Public Comments on Interventions to Improve Care of Bereaved Persons

Dec 10, 2023 | Advocacy, Data Collection, Federal Government

Federal Government Requests Comments on Interventions to Improve Care of Bereaved Persons

In 2023, and as a result of your hard work, Congress directed The Agency for Healthcare Research and Quality (AHRQ) to establish an evidence base for what constitutes high-quality bereavement and grief care. This systematic review will inform an independent subject matter expert panel that will assess the feasibility of developing consensus-based quality standards for high-quality bereavement and grief care.

AHRQ is seeking comments from the public for a limited time. Outlined below are AHRQ’s initial findings and how you may submit your comments directly. The deadline for public comment is January 11, 2024!

Background & Objectives

Bereavement – the state of having lost someone – and grief – the emotional response to the loss – are fundamental aspects of the life course and most individuals will experience the loss of someone during their lifetime.1 In recent years, a growing number of individuals report experiencing grief and bereavement, due to both better identification of grief and grief-related needs, as well as a large aging population, the COVID-19 pandemic, and more frequent mass trauma events. Emotions related to grief can include feelings of deep sadness, longing, and shock.2 There are a range of interventions to support individuals through their grieving process, ranging from informal supports (e.g., online resources, pamphlets, bereavement support groups) to formal supports such as individual and group therapy. Most individuals experience acute grief without formal intervention, yet a small subset of individuals develop complicated grief or grief with a high level of distress that extends 6 to 12 months following the death.3-5 This type of grief was named prolonged grief disorder by the WHO and included in the ICD-11 in 20186 and classified as a formal disorder in the DSM-V TR in 2022.7 Symptoms of prolonged grief disorder include persistent longing for the deceased person, difficulty accepting the death, emotional pain, and feelings of bitterness.8, 9 In addition, recently bereaved individuals face higher medical risks as well, including increased risk of morbidity and mortality,10-13 suicide,14, 15 and lower functional status and quality of life.10, 16

There are a range of decisional dilemmas related to the screening, intervention, and follow-up of bereaved individuals for grief and grief-related needs over time. Broadly, there is ongoing debate about the “medicalization” of grief and its characterization as a disorder. Potential consequences of this medicalization of grief include the overdiagnosis,  overtreatment, and the loss of traditional and cultural methods of adapting to the loss of a loved one.17 Then there are important questions related to the appropriate screening of bereaved individuals, or those who may become bereaved, to identify and intervene on maladaptive grief responses, such as prolonged grief disorder. In general, mental health services for bereaved individuals, especially bereaved individuals who are caregivers to individuals at the end of life, are considered to be underutilized.18 The public health model for bereaved individuals focuses on identifying and supporting three groups: a) the bereaved population as a whole (universal approach), b) individuals who may be at risk for prolonged grief disorder (selected approach), and c) individuals who have signs or symptoms of a grief disorder (indicated approach).19 Some argue that a universal approach to screening may overlook some individuals who need more tailored support, while engaging other individuals who may not need intervention.20 In contrast, a selected or indicated approach may overlook the opportunity to support and intervene a wider group of bereaved individuals who could benefit.

Related to approaches to identifying and supporting bereaved individuals is the timing of screening and intervention. A variety of factors are related to the grieving processes that make it challenging to determine the most appropriate time to conduct screening. Bereavement processes are unique to each bereaved individual and the trajectory is cyclical, rather than staged.21, 22 The type and circumstances of death (e.g., expected vs unexpected), preparation for the death, awareness of prognosis, acceptance of death, and readiness to engage in bereavement can all play a role in grief processes and timing. While proactive and early screening provides an opportunity for early intervention during the normal bereavement process, screening that comes too early in an individual’s bereavement process may at best be ineffective, and at worst, create undue distress and anxiety. In contrast, screening that happens later in the course of bereavement may miss a window of opportunity for intervention.

In general, clinicians feel that bereavement screening could be useful yet there are various contextual barriers to implementation in health care settings.23 Many bereaved individuals have time-limited contact with the healthcare system in the context of their loss and typically only if their loved one dies in a healthcare setting such as in a hospital, intensive care unit, emergency room, nursing home, or hospice. This limits opportunity for screening and intervention as well as consistent follow-up, with potential for wide variation in how screening is conducted and by whom. Numerous tools exist, but with little consensus or standardization regarding what to use when, and inconsistent implementation.24-27

There are several decisional dilemmas pertaining to appropriate interventions for grief. Given the cyclical and non-linear trajectory of grief, identifying the optimal time for intervention is a persistent challenge for the field. For example, could bereaved individuals experiencing “normal” or typical grief still benefit from formal interventions, and if so, what types of interventions might be most useful? When does normal grief cross a threshold into prolonged grief, and when is formal intervention likely to be most effective? And who is best suited to deliver grief interventions (e.g., health care providers such as a psychologist or psychiatrist for therapy/pharmacotherapy vs community-based practitioners such as a grief counselor or spiritual counselor)? 28-30

There are also outstanding questions regarding the effectiveness of treatment for bereaved individuals who have been identified as having a grief disorder. Interventions to treat prolonged grief disorder include interpersonal psychotherapy, cognitive behavioral therapy, bereavement programs, peer support and group therapy. Most studies on interventions to treat bereaved individuals, however, are small pilot studies.29 There are conflicting results related to the effectiveness of preventive interventions prior to the death, while interventions after the death have resulted in short and long-term improvements.31 Information on their implementation and use in practice is varied, and there are inconsistencies in the extent to which current practice is substantiated by grief and loss theory. This in turn may diminish their credibility and further limit their use in practice. Innovative interventions such as narrative storytelling32 have recently been developed to address averse emotional outcomes of grieving, but little is known about their effectiveness in clinical practice.

We know little still about how contextual factors might impact the effectiveness and even appropriateness of grief interventions.33 The same factors that might influence the timing and appropriateness of screening likely impact the adoption and effectiveness of grief interventions such as circumstances of the death (e.g., traumatic death, anticipated death, overdose, suicide), and place of death such as the ICU, relationship to the deceased person (e.g., child, spouse, estranged relationship), and social isolation and loneliness.34 Comorbid mental health conditions – both pre-existing as well as new onset – may play a particularly influential role, for example the interaction between grief and comorbid depression, and how this should be integrated into intervention. Cultural preferences may influence whether a bereaved individual engages in the intervention, and what types of interventions are likely to be useful and effectives.

Finally, questions remain regarding feasible and appropriate follow-up of bereaved individuals identified as grieving and with grief-related needs. Because grief and bereavement are cyclical non-linear processes unique to each individual,22 follow-up screening may be particularly useful to capture any new, maladaptive (or otherwise benefitting from intervention) responses to grieving. However, follow-up and longer-term screening and intervention is complicated by the various settings in which bereaved individuals may interact. For example, bereavement support might be available in the hospital following an inpatient death, but service is often discontinued once the bereaved individual returns home. Community bereavement support may be available but is often only accessed if the bereaved individual proactively seeks it out, and even then, systematic follow-up in the community is likely highly limited. Some emergency departments report bereaved family members commonly requested referral to community bereavement resources, but found that consistent follow-up was resource intensive and difficult to implement.35 This gap between intervention and follow-up risks overlooking the potential for maladaptive grief response over the longer-term, when it may actually be more likely to develop.

Key Questions

The key questions proposed for the systematic review, addressing screening approach (Key Question 1), screening tools (Key Question 2), bereavement interventions (Key Question 3), and maladaptive grief-related disorder interventions (Key Question 4) were generally supported by key informants, and slightly refined following their input. We sought input from six key informants; including a patient advocate, a caregiver representative, a supportive medicine physician, a clinical psychologist, an expert in spiritual grief, and a social work representative focusing on policy. Key informants emphasized that grief is nonlinear and differs by individual person, and noted that the lack of guidance around grief and bereavement care reinforces the need for a systematic review. Major considerations or revisions recommended by key informants included 1) the importance of extending the screening and follow-up period to more than 1-year following the loss; 2) the need for clinical interview or qualitative assessment in addition to standardized screening and diagnostic tools; 3) the importance of taking spiritual, religious, and cultural differences into account when screening, assessing, and diagnosing; and 4) the importance of considering different bereavement contexts including the type of death (e.g., illness), nature of the death (e.g., sudden death), setting of death (e.g., hospital), relationship to the deceased person (e.g., spouse), and age of the deceased person (e.g., child). Finally, key informants also noted that screening and intervention can take place in the community beyond healthcare settings; for example, facilitated through religious institutions, support groups, and online organizations.

Following the described input, the key questions are as follows:

Key Question 1: What is the effectiveness and harms of universally screening people for bereavement and response to loss?

  1. Timing: predeath, acute, or 6-12 months post loss, and more than 1 year post loss?
  2. Does effectiveness vary by patient characteristic or setting?

Key Question 2: How accurate are tools to identify bereaved persons at risk for or with grief disorders?

Key Question 3: What are the effectiveness, comparative effectiveness, and harms of interventions for people at risk for grief disorders related to bereavement?

  1. Timing: predeath, acute, or 6-12 months post loss, and more than 1 year post loss?
  2. Does effectiveness vary by patient characteristic or setting?

Key Question 4: What are the effectiveness, comparative effectiveness and harms of interventions for people diagnosed with grief-related disorders?

  1. Does effectiveness vary by patient characteristic or setting?

Logic Model

The analytic framework depicts the patient population, the interventions, and the outcomes that will be addressed in the evidence synthesis

References

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  20. Lichtenthal WG, Nilsson M, Kissane DW, et al. Underutilization of mental health services among bereaved caregivers with prolonged grief disorder. Psychiatr Serv. 2011 Oct;62(10):1225-9. doi: 10.1176/ps.62.10.pss6210_1225. PMID: 21969652.
  21. Bonanno GA, Wortman CB, Lehman DR, et al. Resilience to loss and chronic grief: a prospective study from preloss to 18-months postloss. J Pers Soc Psychol. 2002 Nov;83(5):1150-64. doi: 10.1037//0022-3514.83.5.1150. PMID: 12416919.
  22. Bonanno GA, Kaltman S. The varieties of grief experience. Clin Psychol Rev. 2001 Jul;21(5):705-34. doi: 10.1016/s0272-7358(00)00062-3. PMID: 11434227.
  23. Lawler L, Plunkett E, Johns L, et al. Exploration of clinicians’ perspectives of using a bereavement risk screening tool in a palliative care setting: a qualitative study. Bereavement Care. 2020 2020/09/01;39(3):133-40. doi: 10.1080/02682621.2020.1828769.
  24. Roberts K, Holland J, Prigerson HG, et al. Development of the Bereavement Risk Inventory and Screening Questionnaire (BRISQ): Item generation and expert panel feedback. Palliat Support Care. 2017 Feb;15(1):57-66. doi: 10.1017/S1478951516000626. PMID: 27516152.
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  29. Mason TM, Tofthagen CS, Buck HG. Complicated Grief: Risk Factors, Protective Factors, and Interventions. J Soc Work End Life Palliat Care. 2020 Apr-Jun;16(2):151-74. doi: 10.1080/15524256.2020.1745726. PMID: 32233740.
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  45. Methods Guide for Effectiveness and Comparative Effectiveness Reviews. Content last reviewed March 2022. Effective Health Care Program Agency for Healthcare Research and Quality.  Rockville, MD: 2021.

We Have Achieved So Much Because Of You

Dec 9, 2023 | Advocacy, Community, Data Collection, Federal Government

We Have Achieved So Much Because Of You

Ten years ago, no one talked about bereavement‘s impact on us or the trajectory of our lives.

Today, bereavement is highlighted in major media outlets, in the halls of Congress, and in our communities. Thousands of people believe in our vision, which has been humbling and inspiring.

It is all possible because of you.

In January 2020, before COVID-19 came to the United States, we took your stories and quality data to Congress with a message that bereavement was an urgent concern for millions in America. Congress needed to act now.

Together, we made calls, talked to legislators, and secured the nation’s first bereavement provision in the U.S. budget process — and our work had only just begun.

Over the last three years, together, we have continued to make tremendous strides in helping all bereaved people achieve a healthy, prosperous, and equitable future.

Here are just a few highlights:

 

And, we have so much up our sleeves for 2024!

The Evermore Board of Directors

Jacqueline Corbin-Armstrong

Evermore, Chair

Norman Greene

Princess Hyatt

Donna Mazyck

Joyal Mulheron

Mark Standard

A Year in Review 2022: Advancements in Bereavement Care

Dec 20, 2022 | Advocacy, Appropriations, Community, Data Collection, Family, Federal Government, Grief, Research

In 2022, our community of supporters has grown by more than 50 percent for the second consecutive year. Our movement consists of people from every corner of America – from truck drivers to professors to homeschoolers and executives. We unite in solidarity to create a more compassionate world for those who will follow us. What do we do with the pain of loss? We create change.

We’ve done that in 2022, and we are on the cusp of much more. This year has been the most consequential yet in the advancement of bereavement policy, and we could not have made it this far without you. As we reflect on 2022 and look towards 2023, there are some bright spots we want to share with you:  

  • We are winning mindshare among our nation’s most esteemed federal health leaders. In an event hosted by the Centers for Disease Control & Prevention (CDC), our founder and executive director Joyal Mulheron, had the distinguished opportunity to provide a private briefing to key U.S. Department of Health & Human Services agencies on bereavement policy, research, and statistics. As an emerging social and health concern, it is imperative that government leaders understand the complexity of bereavement policy and its impact as it crafts and prioritizes its response. 
  • With Evermore’s support, Congress is directing the federal government to establish credentialing standards for grief therapists. Supporting bereaved people requires specialized training, which is not currently required for mental health practitioners. We are thrilled that Congress has directed federal health leaders to create universal eligibility standards to bring consistent and quality care to all grieving people.
  • For the first time, Congress is encouraging CDC to collect bereavement data because of Evermore’s advocacy. Adding bereavement exposure to CDC data collection provides key demographic data and trends by race, geography, chronic disease risk factors, identity, and age, for example. A recurring data set of this magnitude will facilitate a better understanding of the scope of the problems connected to bereavement, and it will inform future policymaking and program priorities and investments.
  • With Evermore’s support, Congress is directing federal health leaders to write the nation’s first report on grief and bereavement. COVID-19 and the nation’s concurrent mortality epidemics have impacted millions of Americans, yet grief and bereavement are not prioritized in our nation’s health policies, programs, or funding initiatives. This report will provide a holistic evaluation of the scope of the issue, the populations impacted, and the interventions offered to support grieving children and families. 
  • We are fighting for consumer rights, protections, and price transparency in the funeral industry. In almost every state in the nation, funeral homes are not required to publicly share their prices before a bereaved family walks through their doors, thereby leaving newly bereaved families vulnerable to price gouging and spending on services they don’t need or want. Evermore is preparing comments to submit to the Federal Trade Commission (FTC) on why funeral homes should be required to share pricing information publicly. This proposed amendment may substantially protect bereaved families during times of loss and crisis. 
  • Evermore releases America’s Forgotten Orphans, a free 58-page report, to bring childhood bereavement to the attention of federal lawmakers and agencies. In collaboration with Penn State and the University of Southern California, we identified a 22-year trend in increasing childhood bereavement across every state in the nation and among every racial and ethnic population. Childhood bereavement, and bereavement generally, have been a long-standing public health and social concern hiding in plain sight. 
  • Evermore releases free fact sheets and tools to calculate childhood bereavement in your own jurisdiction. We’ve developed 51 state fact sheets that help state and local lawmakers assess and better understand childhood bereavement in their jurisdictions. In addition, we’ve provided tools allowing local champions to calculate the prevalence of childhood bereavement in their school or Congressional districts. 
  • We are bringing the nation’s experts in grief and bereavement to you. This year we launched In the Know, a monthly video series featuring some of the nation’s experts in grief and bereavement, including luminaries like Megan Devine, one of our nation’s most respected grief leaders, and Dr. Toni Miles, who helped pioneer bereavement epidemiology. 
  • Evermore’s national grief directory continues to be a top resource for grieving children and families. Our comprehensive grief directory features more than 300 nonprofit resources across every state in the nation and continues to grow.
  • Our weekly newsletter keeps our community connected, learning, and engaged. This year we launched a weekly newsletter to provide insights on bereavement science, policy, and community action. Our readership continues to grow as our stories and information aim to transform our nation’s systems toward supporting the lives of bereaved children and families. 

 

We are not sitting on the sidelines and hoping change will come. We are actively working to advance these critical developments with respect and credibility each day. As we close out 2022, we want to thank you for making our work possible. Unlike other health and social concerns, bereavement policy and law are not funding priorities for any philanthropist or foundation we can find. Instead, people like you solely fund our movement.

 

We will continue our work building a healthy, prosperous, and equitable future for all bereaved people in 2023. If you would like to support our work in the coming year, you can make a donation here.

 

We wish you and yours a warm, healthy, and restorative 2023!

Dr. Emily Smith-Greenaway Shares Research on Bereavement’s Far-Reaching Impacts

Oct 31, 2022 | Data Collection, Family, Grief, Parent, Research

Earlier this month, Evermore hosted a conversation with Dr. Emily Smith-Greenaway, a grief and bereavement researcher in California and associate professor of sociology and spatial sciences at the University of Southern California, to discuss her research on bereaved people and her work on the COVID-19 bereavement multiplier.

The bereavement multiplier is a tool used to track how many people have been directly impacted by a COVID-19 death. According to research findings from Dr. Smith-Greenaway, on average, for every death due to COVID-19, approximately nine people have been or will be bereaved. With more than 1 million Americans having died of COVID-19 thus far, that leaves approximately more than 9 million people bereft.

COVID-19 multiplier over the course of the pandemic in the United States“This multiplier [tool] allows us to really track how many bereavement events there have been in the midst of an ongoing mortality crisis,” says Dr. Smith-Greenaway. “This gives us a really different scale of the height of this mortality crisis by emphasizing how many people have been intimately affected by COVID mortality.”

While the Centers for Disease Control and Prevention measures deaths in the United States, it doesn’t measure how many people are impacted by those deaths. Dr. Smith-Greenaway’s multiplier tool therefore offers an important and useful way to begin to understand the scale and impact of bereavement in this country.

“We can absolutely extend this approach to other causes of death,” says Smith-Greenaway. “What I think is so useful about that is that I expect there will be inversions sometimes – how some less common causes of death may still have an outsized effect in terms of bereavement. It’s a tool we can absolutely use to really get a sense of the lingering effects of certain mortality crises the U.S. is facing beyond COVID.”

Dr. Smith-Greenaway’s research also examines the ways in which social inequality intersects with mortality and how those disparities affect the experience of survivors, at an international scale.

“Inequality and mortality conditions also mean inequality in access to kin and social support and this really unequal burden of bereavement that we see playing out across the globe,” says Dr. Smith-Greenaway. 

Dr. Smith-Greenaway’s work found that younger people are disproportionately impacted by COVID-19 deaths. 

“Really early in the pandemic, the narrative was that this mortality shock was disproportionately affecting older adults,” says Smith-Greenaway. “We see actually it’s younger people who are bearing the brunt of these losses because they’re disproportionately losing grandparents and parents.”  

https:///youtu.be/tmUx2tj6TcA

In a study that followed a group of young children from birth through adolescence, Dr. Smith-Greenaway found that the death of a maternal grandparent played a significant role in the academic success of young boys. Data showed that boys who lost a grandparent earlier on in life – between the ages of five and nine – are significantly more vulnerable to lowered cognitive skills for reading comprehension and verbal and math ability. 

“This is really striking because developing these skills on time is really important for youths’ subsequent academic skills and their subsequent behavioral outcomes and academic outcomes,” says Dr. Smith-Greenaway. “Interestingly, we’re not finding anything in terms of young girls.”

Dr. Smith-Greenaway surmises this disparity is a product of the way we typically socialize boys into muting their grief. This type of socialization could be the direct cause as to why research points to these disadvantages in academic skills. 

According to Dr. Smith-Greenaway, it’s the impact of bereavement on boys from historically marginalized communities that are really driving the effects seen in the data. Non-Hispanic Black boys and Hispanic boys showed significant impacts to their verbal, math, and reading abilities after experiencing the death of a grandparent between the ages of five and nine. 

Dr. Smith-Greenaway’s work also found that Black and Hispanic boys suffered from more severe depressive systems when compared to their white peers after the death of a grandparent. 

“There’s also work emphasizing how racial minority boys, in particular, tend to have this ‘suffocated grief,’” says Dr. Smith-Greenaway. “Their grief is viewed as just bad behavior, or acting out, rather than acknowledging that it’s just their very normal reaction to a loss.”

In a global study on the deaths of children under five, Dr. Smith-Greenaway discovered some monumental disparities, not only in child loss, but also in the impact of those losses on mothers. This study found that 30 to 40 percent of sub-Saharan African mothers between the ages of 20 and 44, have experienced the loss of a child – a number that increases to 50 to 60 percent for women ages 45 to 49. 

Dr. Smith-Greenaway’s work highlighted striking inequalities in child loss between women in African countries compared to women in other countries. For this research, Smith-Greenaway looked at demographic and health survey data spanning more than 20 years for mothers of multiple age groups in 20 sub-Saharan African countries.

While many initiatives have focused on the disparities in infant mortality between white and African communities, the disparity is even greater when looking at mortality in children. 

Total child loss burden among mothers 45-49 years old, expressed per 1,000

“In some sub-Saharan African countries, it’s more common to have witnessed a child die than it is to have witnessed all of your children survive beyond the age of five,” says Smith-Greenaway. “This work is trying to attend to the fact that losing a child is this underappreciated dimension of global health inequality that manifests in womens’ lives.” 

Dr. Smith-Greenaway’s work also uncovered yet another trend associated with child mortality – intimate partner violence (IPV). In a 2020 study, Dr. Smith-Greenaway concluded that child loss corresponds with a higher risk of intimate partner violence in a number of sub-Saharan African countries. The increase was found, somewhat surprisingly, not in communities where child death was more common, but in communities where it was both less likely and where there was greater parity in education between genders.

Although there is nothing in the data to explain why this increase in IPV exists, Dr. Smith-Greenaway suspects it could be a result of maternal blame for the death of the child. 

“It suggests that maybe where child loss isn’t as expected, there’s less of a support system in place for when you do lose a child because it’s just a less common experience in the community,” says Smith Greenaway. “We do see that that comes with an outsized risk of IPV.” 

Here in the US, in 2020, the most recent year data is available, the CDC recorded more than 3.4 million deaths in the United States, the most on record. That leaves more than 30 million people in the U.S. recently bereaved, yet the death of a loved one and its implications most often remain invisible. 

Thanks to research like Dr. Smith-Greenaway’s, which you can learn more about here, Americans can begin to understand the global breadth of bereavement, and we can establish an increased awareness of these issues so that families may find support when they need it more than ever. 

This is why, at Evermore, we work every day to raise awareness and develop our nation’s bereavement care systems. Our work centers around evidence-driven advocacy for the bereaved children and families because no one should be left to bare knuckle their way through the aftermath alone.  With millions impacted domestically and around the globe, we can – and should – do more to help our friends, families, and communities. 

The Bereavement Benefit Most Women Don’t Know About (But Should!)

Oct 4, 2022 | Advocacy, Data Collection, Family, FMLA, Research

As many as half of all pregnancies end in miscarriage. Even though 87 percent of women have experienced a miscarriage while employed, an alarming number of women aren’t aware that the Family Medical Leave Act (FMLA) allows for time off from work after a miscarriage and stillbirth. 

These were the findings from a survey conducted by InHerSight in partnership with Evermore. InHerSight uses data to help women find employers and companies that support women’s goals and needs. This survey, conducted earlier this year, included 1,300 women, with the goal of assessing their awareness of their right to time off work under FMLA after experiencing a miscarriage or stillbirth. 

Survey results were striking, with 77 percent of respondents indicating they were unaware they had access to this protection. Sixty-six percent of these women reported that they hadn’t been informed by their employer of their legal rights regarding leave under FMLA, which guarantees up to 12 weeks of unpaid leave if the employee is unable to work because of his or her own “serious health condition.”

While miscarriage and stillbirth are not specifically included in the definition of “serious health condition” in FMLA, Department of Labor statements and other legislative documents indicate miscarriage is covered by the policy. A woman whose pregnancy ends in miscarriage should be able to use FMLA leave if she’s unable to work due to physical recovery or emotional distress.


Even so, 91 percent of women who have experienced a miscarriage or stillbirth while employed reported taking no days off work to recover. Ninety-eight percent of the women surveyed reported not filing for leave under FMLA after experiencing a miscarriage or stillbirth. [Read more about InHerSight’s findings here.]

“Knowing federal leave benefits should not be the responsibility of a newly grieving woman or family. Employers have a tremendous opportunity to provide a supportive workplace environment by ensuring that women are aware of their rights.”

As Evermore seeks to learn more about the realities of bereavement in the United States, and the impact of those realities, partners like InHerSight play a crucial role in gathering data and identifying areas in need of policy change and community support. Evermore partnered with InHerSight for this survey because of the company’s dedication to women employees and their benefits and well-being in the workplace. 

“Partners like InHerSight are critical in facilitating transformational social policy,” Mulheron says. “Bereavement is ubiquitous. Understanding the impact, collecting data on the family’s perspective, and then shining a spotlight on those experiences requires leadership. We are grateful to InHerSight and others who are advancing bereavement care in America.”

The findings from this survey indicate how important it is for workplaces to provide effective education and communication that cultivates a supportive environment for employees experiencing bereavement. At Evermore, we believe it is crucial that employers take greater initiative to inform their employees of the benefits and protections available to them. 

Benefits should be communicated through employee handbooks, during onboarding and orientation trainings, and throughout the duration of a worker’s employment. When the time comes for employees to exercise their benefits, employers should be prepared to guide them through the process and direct them to human resources (HR) for further assistance. 

Employers must also work hard to create a culture in which people can bring personal and emotionally challenging issues to their directors, managers, and HR personnel. To further support an inclusive workplace culture, Evermore also recommends that employers institute five days of paid bereavement leave for all employees. 

“According to the Department of Labor, only 56 percent of America’s workforce qualifies for FMLA benefits,” Mulheron says. “That leaves millions of women working in the gig economy, in small employers, or as solopreneurs who have no benefit at all.” 

In 2021, Senator Tammy Duckworth (D-IL) and Congresswoman Ayanna Pressley (D-MA) introduced legislation that aims to raise awareness about pregnancy loss and provide paid leave benefits for workers experiencing the pain of a miscarriage or stillbirth. The Support Through Loss Act supports bereaved workers by increasing access to workplace supports and access to resources and adequate care. 

“Pregnancy loss should be met with care, compassion, and support. It is a common experience, but many struggle in silence due to the lack of awareness and cultural stigma,” says Pressley in a press release detailing the legislation. “Our bill sends a message to families that they are not alone.”

It is also imperative that employees know how to advocate for themselves in order to access the benefits available to them. If you are unaware of the benefits at your workplace, ask your manager or an HR representative to guide you through company policy. Evermore encourages readers to communicate their knowledge with coworkers, improve awareness in the workplace, and work together to create a workplace where benefits are a continuous topic of conversation.

Toni Miles’ Ground-Breaking Research in Bereavement Prevalence

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.