Jun 19, 2024 | Advocacy, Federal Government
Got Questions? National Call to Discuss the U.S. Government’s First Report on Grief & Bereavement
We’re Here to Answer Your Questions:
Join Us!
]In May, the Agency for Healthcare Research and Quality (AHRQ), a little-known government agency, released its draft report, “Interventions to Improve Care of Bereaved People.” This is the U.S. government’s first report on grief and bereavement, and AHRQ is accepting public comments until Friday, June 28, 2024.
- You can submit your comments via this link.
- Additional context for the report can be found here.
If you have questions, consider joining Evermore’s national call this Friday at 1 p.m. Eastern Time.
Reviewers found that “important gaps in our knowledge of various aspects of bereavement care” remain. This report is a first step toward advancing bereavement care for all bereaved people, but a lot more work needs to be done.
Your voice, questions, and concerns are important. Please consider submitting them today.
Apr 17, 2024 | Advocacy, Federal Government
When someone close to us dies, we’re hardly in the right frame of mind to handle logistics and practical matters. Yet, often, this is the first thing we’re forced to confront.
There’s the matter of the deceased’s body and how it will be handled, but also funeral arrangements and ceremonial planning to honor the life of the person we’re grieving.
Funeral planning requires people to make multiple decisions while experiencing difficult and intense emotions. Making matters even more challenging, funeral arrangements are financially taxing.
In America, the funeral industry is essentially unavoidable after someone close to us dies. Because the funeral industry is ubiquitous and homogenous — offering the same services, same processes and procedures for after-death care — we rarely question it. But there’s a lot about the funeral industry you may not know.
Here are five facts about the funeral industry that will probably surprise you:
1. The funeral industry pulls in big dollars.
In the U.S., funeral homes are a $20 billion dollar annual industry. Most funeral homes are privately owned, and increasingly, more funeral homes are owned by large corporations.
Service Corporation International, the largest death-care corporation in the country, owns and operates more than 1,400 locations in North America and brought in more than $4 billion in revenue in 2023.
“Families are hurting. They are not only losing someone meaningful in their lives, their losses are compounded by the soaring costs in burials and cremations,” says Evermore founder Joyal Mulheron. “The funeral industry is well-funded, made only more profitable by our nation’s concurrent mortality epidemics — just look at their revenue statements.”
According to Statista, there are nearly 19,000 funeral homes in the U.S., yet there remains a surprising lack of competition in the industry. In the past several decades, larger funeral service companies, and in some cases, private equity firms, have bought up smaller, family-run businesses that were well-known and trusted in their communities.
The result has been a growing monopoly on the industry by fewer wealthy — and powerful — businesses. The industry’s consolidation was the central storyline for the 2023 hit The Burial, starring Tommy Lee Jones and Jamie Foxx and directed by Maggie Betts.
2. The funeral industry is poorly regulated.
The funeral industry is primarily regulated by the Funeral Rule. Introduced in 1984 by the Federal Trade Commission (FTC), the Funeral Rule was established to prevent vulnerable families from being exploited by licensed funeral homes after the FTC found widespread deceptive practices that limited consumers’ ability to make informed decisions. Today, if funeral homes violate the Rule, they may be subject to penalties of more than $51,000 per violation.
While this seems like a strong deterrent, the FTC granted the funeral industry a “sweetheart deal” more than 25 years, according to the Wall Street Journal (WSJ). When funeral homes are found to be in violation of the Funeral Rule, they can opt to participate in the Funeral Rule Offenders Program (FROP), a training program run by the National Funeral Directors Association (NFDA), which is the industry’s largest trade association and lobbying group. The offending funeral homes who enroll in the program become members of the association.
Essentially, the organization that lobbies lawmakers for fewer industry regulations is the same entity responsible for “policing” and penalizing offending businesses. NFDA conceals violations from American consumers and according to some experts, “it’s essentially a hush-money business.” However, the WSJ secured a list of 538 funeral homes that violated the Funeral Rule and publicly reported them earlier this year.
3. With no price transparency requirements for the funeral industry, consumers are highly vulnerable to overpaying.
In October 2022, the FTC revealed that more than 60 percent of funeral homes have little to no pricing information on their websites. This leaves consumers in a particularly vulnerable position.
“Imagine losing your child and then having to negotiate where their body goes and how much you’ll pay for it, all within hours,” says Mulheron. “When our own daughter was terminally ill, I called several funeral homes in hopes of identifying one where she could be taken once she died. Several told me they would ‘cut me a deal’ if she died soon. One facility, more than an hour away from our home, said, ‘We charge our flat rate for children of $400.’ We need more people like this leading the industry, not private equity brokers.”
Funeral costs for a single death event are significant, especially for families who struggle to cover the ongoing costs of housing, food, and medical care. According to a 2023 NFDA survey, the average cost of a funeral with a viewing and burial is nearly $8,300. A funeral with cremation costs only about $2,000 less.
These costs don’t take into account the costs of the cemetery, monument, marker, or other miscellaneous expenses, such as flowers. According to the Funeral Alliance Association, these added expenses often increase the total cost of full funeral services by $2,000 or $3,000.
4. Plan your funeral, but don’t prepay!
Following the WSJ’s release of the 538 funeral homes that violated federal law, a second WSJ article featured several stories of individuals who tried to act responsibly by paying for their own funerals in advance of dying. In some cases, their families ended up paying twice or more than the initial contracted amount. Whether it is lost paperwork, industry consolidation, “the fine print,” or something else entirely, it’s best to plan for the funeral but not pre-pay, then share your desires widely with family and friends.
5. Rather than regulate, your hard-working tax dollars are being used to reimburse funeral expenses.
In 2020, Congress passed a bill reimbursing some families for funeral expenses and only if they lost a loved one to COVID-19 (i.e., if your loved one died from overdose, homicide, or suicide, for example, you do not qualify for reimbursement). As of today, the Federal Emergency Management Agency (or FEMA), responsible for managing taxpayer reimbursement dollars for funeral expenses, has distributed $2.8 billion to 438,000 approved applications, with an average award of $6,400.
Fortunately, the federal government is beginning to act. The FTC has initiated a regulatory process indicating it will reissue the Funeral Rule. Evermore submitted comments to the FTC and is continuing to follow along. However, this process can take years and there is no indication on when the FTC might act. There is reason to believe that the industry will sue the FTC when it does act, further delaying price transparency.
It’s time for the funeral industry to join the digital age by sharing prices online. If we, as a nation, focus on closing down children’s lemonade stands for operating without permits, we can easily protect consumers from the funeral industry’s bad actors. After all, as Benjamin Franklin said, “nothing is certain except death and taxes.”
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We welcome readers to share their experiences working with funeral homes — positive or negative, confusing, frustrating, or supportive. If you have a story to share, email us at hello@stagingevermore.dbdodev.com.
Jan 11, 2024 | Advocacy, Federal Government
Evermore Submits Comments to AHRQ on Interventions to Improve Care of Bereaved Persons
Bereavement’s long-standing absence from public policy debates and national health priorities, along with its newfound urgency, requires sound leadership and an aggressive agenda to address the substantial challenges confronting our nation’s grieving population. Today, America lacks a comprehensive, coordinated, and evidence-based bereavement care system that is protective and mitigates bereavement’s harmful effects across time and place. As a result, bereavement has major spillover effects at every stage of the life course, especially in the first two decades of life (for children and youth) and in mid-life (when family formation, child-rearing, and employment peak).
However, bereavement as a public concern is in its nascent stages and thus offers an unparalleled opportunity to leverage existing public and private healthcare initiatives to go “upstream” by delivering effective preventive services to stem the onset of chronic or debilitating health conditions associated with bereavement.
For example, in one 2020 register-based study examining the entire Norwegian population from 1986 to 2014, researchers found evidence of elevated alcohol-induced mortality among bereaved parents. Based on this evidence, healthcare providers should invoke existing quality alcohol misuse screening tools for bereaved parents to stem the short- and long-term ramifications of alcohol misuse following the death of a child. According to the U.S. Preventive Services Task Force (USPSTF), unhealthy alcohol use screening among adults aged 18 presently receives a B rating. Healthcare providers attending to newly bereaved parents can identify the patient’s risk for developing alcohol misuse while also preventing the onset of addiction and reducing premature mortality. Evidence-based tools for grief and bereavement may be lacking, but alcohol misuse evidence-based resources are not.
Read the full letter..
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?
- Timing: predeath, acute, or 6-12 months post loss, and more than 1 year post loss?
- 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?
- Timing: predeath, acute, or 6-12 months post loss, and more than 1 year post loss?
- 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?
- 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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Dec 10, 2023 | Advocacy, Family, Federal Government, Uncategorized
Congress Recedes on Bereavement Leave in the FY24 National Defense Authorization Act
Over the last few weeks, many of you called your U.S. Senators seeking their support in allowing the U.S. Armed Forces to return home when their parents die. This bereavement leave would be an added provision to last year’s National Defense Authorization Act (NDAA) language that allows the U.S. Armed Forces to receive 14 days of paid bereavement leave for the death of a spouse or child.
The U.S. House of Representatives sought to expand bereavement leave for the deaths of servicemembers’ parents, but the U.S. Senate bill did not include the same provision.
To reconcile the differences between the House and Senate versions of the bills, Congress determined that U.S. Armed Forces members would qualify for leave under current leave options provided to servicemembers, and they issued the following statement:
The conferees note that the section 622 of the National Defense Authorization Act for Fiscal Year 2022 (Public Law 117- 81) created bereavement leave as a codified benefit for members of the Armed Services to ensure that no member could be denied paid time off following the death of a child or spouse. This benefit was a compromise borne out of a separate legislative proposal, section 622 of H.R. 4350, the National Defense Authorization Act for Fiscal Year 2022, as passed by the House of Representatives, that would have guaranteed paid leave time for parents who lose a child if the servicemember’s parental leave had already been approved but not yet fully used. But that proposal would not have provided any guaranteed paid leave for parents who had already used their parental leave, and it would not have provided any guaranteed leave for members following the death of a child after the child’s first year of life, as parental leave was required to be used within a year of the birth or adoption of such child. Section 622 would also not have provided any guaranteed time off for members upon the death of a spouse.
The conferees note that bereavement leave was never intended to create an entirely novel statutory entitlement to cover any loss that a servicemember might face, but rather to ensure that members who face the most difficult loss, the death of a child or spouse, could not be denied leave time to grieve such death. The annual leave policy under section 701 of title 10, United States Code, provides a generous benefit for members to take leave for personal reasons, including personal loss. Such statutory entitlement is bolstered by standing Department of Defense policies that provide for emergency leave, advance leave, compassionate reassignment, and many other policies supportive of servicemembers when in need.
Bereavement leave is one additional backstop to ensure that no member could be denied a period of paid time off from work following the death of a child or spouse. Because of this, bereavement leave was made non-chargeable if affected servicemembers had fewer than 30 days of leave so that none could be denied such leave on the grounds that they had already used their accumulated paid leave. The conferees expect that servicemembers who experience the loss of a close family member are afforded as much time off as possible, including via bereavement leave or emergency leave; alternate duties as required; and other accommodations as situationally appropriate.
Because of you, we had wonderful and supportive calls with both Democratic and Republican legislators, and as a result, Congress issued this thoughtful response.
Thank you for making a difference!
Together, we are making the world a more livable place for bereaved people.
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