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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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Update! Congress Recedes on Bereavement Leave in the FY24 National Defense Authorization Act

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.

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

Visionary & Trailblazing Attorney Kenneth Feinberg Offers Five Reflections On Bereavement

Sep 10, 2023 | Advocacy, Community, Family, Federal Government, Grief

Visionary & Trailblazing Attorney Kenneth Feinberg Offers Five Reflections On Bereavement

After serving thousands of families, victim compensation attorney Kenneth Feinberg offers five reflections on grief and bereavement.  

 

By Joyal Mulheron with support from Maddie Cohen

Visionary and trailblazing attorney Kenneth Feinberg has long been called upon by U.S. presidents, families, and survivors to navigate payouts following mass tragedies. He started his career as a settlement specialist for Agent Orange, but is renowned for his leadership in overseeing the 9/11 Victim Compensation Fund (VCF), where he served families for 33 months pro bono.

On the morning of September 11, 2001, Feinberg was teaching class action mediation at a law school in Philadelphia. By the end of class, the world had changed.

By mid-November, Congress established the 9/11 VCF to compensate the thousands of people who lost a loved one or suffered a physical injury. Feinberg distributed over $7 billion to victim’s families.

During Evermore’s 2020 Digital Summit, Feinberg shared his reflections with Anita Busch, VictimsFirst President, on working with tragically bereaved families from the 9/11 attacks and the many other compensation or memorial funds from other tragedies.

Here are five reflections Feinberg offers for supporting bereaved families:

1) There is no one way to grieve.

Families grieve in different ways. Negotiating trauma yields a range of responses, including anger and disappointment to uncertainty and love.

Feinberg admits that when he accepted his assignment in 2001, he had no clue how emotional the work would be. Granted, the situation was emotional—but the thought of disappointing grieving families felt impossible.

 

2) Permission to grieve and a commitment to listening.

During these confidential conversations, he notes that families must be permitted to grieve. The door should be open for each individual to share their perspectives about life’s unfairness and to discuss or validate the memory of a lost loved one.

 

3) Language matters.

According to Feinberg, a less-is-more approach is best. Even people with good intentions risk saying the wrong thing when they try to show empathy after a tragedy. The families of victims and survivors might not want to hear someone else’s take on their grief, no matter how well the other party means.

Feinberg recalls meeting a bereaved father whose two children worked at the Pentagon. The man’s daughter narrowly escaped through a side door, and his son died looking for his sister.

When Feinberg met this father, he said something he deeply regretted.

This is a tragedy,” he stated. “It’s terrible. I know how you feel.”

The man offered Feinberg some friendly advice. “You have a tough job to do,” he said. “But you have no idea how I feel.”

Feinberg learned a life-altering lesson that day. And he cautions others to be careful as well. While intentions are important, language is too.

4) Be transparent.

The attorney recommends giving grieving families all the information they need in a private setting. It’s a matter of protocol, Feinberg explains—but that protocol is an important first step for people in a fragile emotional state. He adds that keeping the door open in this way has been a key factor in the success of programs like the VCF.

From the community’s perspective, Feinberg clarifies that the most important part of a community’s response to tragedy is transparency. Sharing how the greater community can help and how the distribution of compensation or assistance will work. When the world feels uncertain, clarity becomes even more essential for bereaved families.

5) Empathy matters.

No matter what anniversary it is, shedding light on the importance of empathy matters. Families understand the grief they are navigating and recognize that you cannot bring back their loved ones. Genuinely listening and learning about who they’ve lost can help.

To learn more, Feinberg shares his experiences with victim compensation in the books What is Life Worth? and Who Gets What?  In 2020, Netflix released Worth, a movie starring Stanley Tucci and Amy Ryan, plus Michael Keaton as Feinberg, showcasing the challenges in the wake of 9/11.

Key resources

Readers can learn more about bereavement care and acknowledge the anniversary of 9/11 by visiting the links below:

Five Important Questions About FMLA and Bereavement Leave

 

Few Universities Offer Leave Policies and Grief Support for Bereaved Students

 

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

The Bereaved Parents — Who Are Presidents — That Lead Our Nation

Two Dads, One Mission: Better Bereavement Leave

Evermore Advocates for Bereavement in National Maternal & Child Health Program

Jul 28, 2023 | Advocacy, Federal Government, Parent, Research

The scale and reach of the Maternal and Child Health (MCH) Block Grant—with current appropriations of $712,700,000—is indisputable, as 93 percent of pregnant women, 98 percent of infants, and 60 percent of children are touched. While impressive progress has been made in important benchmarks, including the 25 percent decline in infant mortality since 1997, bereavement remains absent from the MCH Block Grant scope. This omission is notable as the agency’s technical advisement manual to state programs mentions death more than 150 times and supports fetal and child death review panels throughout the United States; however, attending to bereavement or grief in the aftermath of these deaths is not included even once in the Health Resources and Services Administration’s (HRSA) guidance. 

 

Bereavement—the loss of a significant relationship by death—is one of the most traumatic stressors a person endures, and extensive scientific evidence domestically and internationally points to the significant, enduring, and life-altering impacts bereavement has on grieving individuals in the short- and long-term. Similar to the MCH Block Grant program, the scale and reach of bereavement in the United States is extensive, particularly as concurrent mortality epidemics—COVID-19, overdose, suicide, homicide, maternal mortality, traffic fatalities, and the emergence of more extreme and deadly climate events—has left no neighborhood untouched.

 

Read more: Evermore Letter to HRSA

ACT NOW: Is Grief Normative or a Diagnosable Condition?

May 12, 2023 | Advocacy, Appropriations, Federal Government, Grief

Open for comment until 11:59 p.m. Eastern Time on Friday June 2, 2023

One of the most hotly debated topics in bereavement care is whether all grief is normative or a diagnosable condition. For the first time, the federal government is beginning to examine scientific evidence on when grief is normative and when, if ever, does it limit daily life and function.

As part of the FY23 U.S. budget process, Congress passed a $1 million appropriation directing the Agency for Healthcare Research and Quality, a federal health agency, to conduct an evidence-based review of grief and bereavement literature to determine the feasibility of developing consensus-based standards for high-quality bereavement and grief care. AHRQ is accepting comments from the public on this issue until 11:59 p.m. Eastern Time, Friday, June 2, 2023. To learn more, visit AHRQ’s website and follow the directions on how to submit a comment.

Further, a technical panel of experts will be convened to help guide and inform federal efforts. Evermore has the distinct opportunity to nominate experts for the technical panel. If you are interested in being nominated, submit a nomination here (the nomination period has now closed). Nominations will be accepted until 12:00 p.m. Eastern Time, Friday, May 19, 2023. Submitting a nomination application does not ensure that Evermore will advance your application to federal leaders. In addition, if accepted, Evermore will not cover expenses related to your service as part of this effort.

As concurrent mortality epidemics touch every neighborhood in America, now, more than ever, our nation must invest in grief and bereavement leaders, programs, and science. This effort will advance our nation toward Evermore’s vision of a world where all bereaved people experience a healthy, prosperous, and equitable future. We are more committed than ever to serving bereaved children and families and the tireless frontline providers who have been on the frontier for decades.

“I Want to Listen to Your Absence”

“Letter to My Father”

“LESS HEAVY THINGS”

“He Checks His Luggage”

“Nevertheless, It Moves”