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.
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
Jun 29, 2023 | Advocacy, Community, Family, Grief, Research
By Terri Schexnayder
Five new releases have landed in bookstores and audible programs recently. Each one delivers the topics of grief and loss through unflinching honesty with the author’s personal story—some even include moments of humor. We encourage you to read and share with bereaved family and friends these selected books.
Dina Gachman’s self-help book, So Sorry for Your Loss: How I Learned to Live with Grief and Other Grave Concerns, was released on April 11, 2023. Since losing her mother to cancer in 2018 and her sister to alcoholism less than three years later, the author and journalist has dedicated herself to understanding what it means to grieve, healing after loss, and the ways we stay connected to those we miss. Publisher’s Weekly called Gachman’s book “a poignant, personal exploration of grief.”
Regarding her esteem for Joyal Mulheron and the nonprofit she founded, Evermore, Gachman said, “after going through a traumatic in-home hospice experience with my mom, I was so happy to discover Evermore, and find out that there are people out there trying to reform bereavement care in the U.S. Until I went through it, I had no clue how emotionally, physically, and spiritually depleting and devastating it could be. I was so moved by Joyal’s story, and by the stories of others I spoke to for the book. So many of us out there are suffering through caregiving or the loss of a loved one, with little help, and Evermore’s mission is one I fully embrace. We need more help and more understanding around death, grief, and loss at home, at work, and as a society.”
In an excerpt from Gachman’s chapter about hospice, the reader learns more about Joyal Mulheron’s own struggles with the system after the loss of her infant daughter Eleanora:
Bereavement care in America is broken, if it even exists, says Joyal Mulheron, founder of Evermore, a nonprofit focused on improving the lives of bereaved families through research, policy, and education. … She saw firsthand how “broken” the system was when insurance companies would call her during her daughter’s pediatric in-home hospice and ask how many days or weeks it would be until her daughter passed away. Mulheron said she had twenty-three providers, but she was the one doing the caloric calculations, making sure her daughter was getting enough nutrition to keep her comfortable. … During that time, the company she worked for asked for her resignation, since she was caring for her daughter and could not devote herself to the job as she once had. Now, she is working to change those systems that were so broken for her, and for so many others.
After avoiding her grief from the loss of her father to bone cancer when Laurel Braitman was a child, the New York Times bestselling author eventually faced—and embraced—her pain in her thirties. What Looks Like Bravery: An Epic Journey Through Loss to Love, released by Simon & Schuster on March 14, 2023, is referred to as the “hero’s journey for our times.”
Her literal journey through mountainous regions, encountering life-threatening wildfires, and visiting with others about their grief along the way, Braitman’s powerful memoir “teaches us that hope is a form of courage, one that can work as an all- purpose key to the locked doors of your dreams.”
She shared how she, like so many of the children she met with, felt shame after their loss. “I became a facilitator to help grieving kids who lost siblings or who were ill … What I learned from them was that shame is really just another way to control the uncontrollable.”
Released on April 4, 2023, A Living Remedy: A Memoir by Nicole Chung, a Korean-American writer who was adopted by white parents is personal and addresses an important topic. Chung not only writes about the loss of both her father and mother to illness within the span of a few years but tackles the issues of class and the inequities of medical care in the United States. She witnessed this firsthand, especially when her father was dying, noting his death was “no doubt exacerbated by his lack of health insurance and limited access to care in the small Oregon town” where Chung grew up.
Chung shared an interview with LitHub journalist Hannah Bae. “I felt compelled to write about grief but also this common American experience, where so many people in this country who are not fantastically wealthy end up facing illness or loss without all the resources and support that we need.”
On Grief: Love, Loss, Memory by Jennifer Senior, released on April 4, 2023, is based on an intriguing story around the journal of a young man Bob who died on 9/11 at the World Trade Center. Atlantic writer Senior interviewed Bob’s parents after his death. Years later, she shared with NPR’s Rachel Martin her desire to find the truth behind why the journal ended up with Bob’s fiancé Jen rather than his mother. “[His mother] was so upset and said, ‘How can you give away the last thing our son ever wrote?’ It was – it is a chance to have – to hear his voice one more time, to, in a weird way, be in conversation with him …”
The nagging question for Senior became, why didn’t Jen give the journal back when Bob’s mother asked for it? On Grief answers that and provides a larger conversation about the book’s title.
The Archaeology of Loss: Life, Love and the Art of Dying by Sarah Tarlow, released on April 20, 2023, shares the archaeologist’s shock and grief when faced with the sudden loss of her husband Mark. Called “a fiercely honest and unique memoir,” it reveals how nothing could have prepared Tarlow, after years of studying death in her research, for the loss of someone she loved. About writing her memoir, Tarlow said:
“When you find your husband lying dead, you think you will not forget a single detail of that moment. As an archaeologist, I like to get my facts right … I am excavating my own unreliable memory. I cannot go back and check.”
Resources:
So Sorry for Your Loss: How I Learned to Live with Grief and Other Grave Concerns
What Looks Like Bravery: An Epic Journey Through Loss to Love
A Living Remedy: A Memoir
On Grief: Love, Loss, Memory
The Archaeology of Loss: Life, Love and the Art of Dying
Time: How to Connect with Loved Ones After They Die
The Guardian: The Archaeology of Loss
WNYC Memoir About Avoiding Grief
NPR: Grief Book Has Its Roots in the Long-Lost Diaries of a 9/11 Victim
LitHub Nicole Chung on Writing Through Grief and How to Begin Again
Jun 29, 2023 | Advocacy, Community, Family, Grief
By Jena Kirkpatrick
Jason Edwards grew up in the small town of Graham in West Texas where being gay was not accepted. Pegged as the class ‘gay boy,’ he was bullied relentlessly. His dad tried to spark his interest in sports and Edwards recalled being out on the field spinning around like Wonder Woman. “I was always different,” he said. On June 7, 2000, Edwards’ sister, Bella, was killed in an automobile accident. “It was like a part of me had been cut off—and I was just bleeding,” he said.
Edwards and Bella were queer siblings. They had an inseparable relationship, supporting each other throughout their lives. “I knew if she was a part of my life, I would always be OK. And then, I was not. I was not OK at all,” he shared. Edwards described the physical feeling of his sister’s loss as if his life source had been pulled out of his chest and replaced with an uncontrollable shake. He stopped writing for years, stopped calling his friends and became a recluse. Eventually, he ended up moving to start his life over because he could not handle the memories.
“There was no help for me,” said Edwards. He found his anger and sadness to be something unlike anything he had ever experienced in his life. The Psychological Bulletin reported in November of 2011, “Experiencing the death of a loved one during childhood or adolescence has long term effects on biopsychosocial pathways affecting health.” Navigating this loss was compounded by his schizophrenia. Edwards said he is not ashamed of his condition, but when a schizophrenic experiences a trauma, they need extra help. “It is ridiculous, it is awful. Public healthcare is a joke—you sometimes wait eight hours to see a doctor for fifteen minutes,” he said.
Edwards believes it is a human right to have grief counseling and healthcare. He continues to deal with complex trauma, experiencing a heart attack and multiple heart issues in the last few years. The Journal of the American Medical Association noted, “Sibling death in childhood is associated with a seventy-one percent increased all-cause mortality risk among bereaved persons.”
Edwards now lives in Austin, Texas, with his husband Matt. In June of 2015, same sex marriage was declared legal in all fifty states. They were engaged that month and married in August of 2016. “We felt that we deserved the same right to be legally married as anyone else did,” said Edwards. This Pride Month has been about spotlighting our queer brothers and sisters and continuing to highlight the societal shifts occurring in our country.
However, on June 22, 2022, the Texas GOP adopted an anti-LGBTQ platform declaring that being gay was ‘abnormal’, which opposes all efforts to validate transgender identity. This year, Texas lawmakers passed bills banning puberty blockers and hormone therapy for transgender kids and restricting the college sports teams that trans athletes can join. Edwards remains optimistic. “When I am at work, I see parents come in with t-shirts that say, ‘Protect Trans Kids.’ The world is changing, and I think we are winning. It is just an uphill battle.” The fight for bereavement care is an uphill battle as well. Being bereaved with no care only compounds the pain of marginalization.
And there are still so many people who do not understand what it is like to be marginalized. If we all woke up tomorrow and the world was different, men were supposed to be with men and women with women, maybe then people would understand how alienating it feels being the minority. Then people might understand how natural it feels to be with the one you love. Oscar-nominated actor Elliot Page said, “This world would be a whole lot better if we just made an effort to be less horrible to one another.”
Edwards remains optimistic and hopeful that our future has no prejudices, a world where understanding and acceptance replaces hate. He tries to fill his days with beauty, love, friends, art, poetry, music, and good food. “We are all rushing towards death. We just need connection,” he said. “What would happen if we all put our differences aside? We could make real change. If we take the time, we can find something in common with everyone.”
Mar 16, 2020 | FMLA, Appropriations
For too long, too many have considered bereavement as simply a mental health issue. When a family member or loved one dies, those grieving experience a deep sadness as their lives are changed fundamentally forever. Conventional wisdom tells us a bereaved individual or family will eventually “get over it,” “find closure” and “move on.” But, those commonly held myths are far from the truth.
Research continues to show that a loved one’s death isn’t something that we just “come to terms” with. Researchers tell us that bereavement grief makes us more prone to cognitive decline, disease and premature death. It can lead to financial loss. And it can tear families apart.
What’s more, federal policies and programs can compound the experience, further victimizing mourning Americans who need more than our thoughts, prayers and casseroles.
For example, of the two million bereaved children in the United States, Social Security Income is not reaching all children leaving those in need with lower levels of economic wellbeing and educational attainment. Or, for example, two fathers Barry Kluger and Kelly Farley have advocated for nearly a decade to protect newly bereaved parents from being fired from their jobs. Imagine losing your child, then your job.
Over the last three weeks, Evermore has been calling Congressional offices, meeting with staff and sending materials to dozens of staffers. And here’s the good news: Capitol Hill is listening, and lawmakers are beginning to understand that bereavement isn’t just a mental health issue, but an issue — and an American issue — that demands serious attention. The question is: will they act?
As deaths from suicide, overdoses and mass casualty events increase, members see how bereavement and the lack of a public health response is impacting their own communities. These discussions come as lawmakers consider appropriations bills and updates to the Family and Medical Leave Act, which currently does not provide time off for workers after a child’s death.
Here’s where Evermore is making big strides in bereavement care.
Appropriations committees address bereavement
In appropriations committees in both the House and Senate, spending bill proposals recommend that the U.S. Department of Health and Human Services seek information from its agencies about their bereavement care activities. Those agencies include the National Institutes of Health, the Centers for Disease Control and Prevention and the Substance Abuse and Mental Health Services Administration, for example.
According to the proposal, the agencies would be tasked with examining their own activities to advance bereavement care for families, including risk factors for survivors and whether policies and programs in place help or hinder coping and processing. Agencies would also be charged with documenting what resources they are providing to the professional community as well.
If approved, it would be the first time the agencies have studied how they address the bereaved and could pave the way for future spending bills that fund new efforts to support those who are grieving.
FMLA expansion could come
Congress hasn’t built upon the Family and Medical Leave Act since it was passed in 1993, and that’s led to many workers not having the right to take unpaid leave or unable to afford unpaid leave when it is available. For many grieving parents, in particular, the law doesn’t carve out an opportunity for them to take time off without fear of losing their job.
But that may be about to change. In February, the House Education and Labor Subcommittee on Workforce Protections held a hearing to talk about FMLA expansion, including bereavement care. In her opening remarks, Rep. Alma Adams, a Democrat from North Carolina, talked about the number of cases where the act does not cover workers who need to take leave, specifically calling out “family members taking time to grieve a child’s death.”
Research continues to show that the death of a child is one of the most severe and prolonged trauma that anyone can experience, which is why it is critical for Congress to recognize child death as an eligible event for FMLA job protection.
Evermore is having an impact here too. We submitted a statement for the record on the importance of including a child death as an eligible event for FMLA.
Our request is three-pronged.
- We want the U.S. Department of Labor to conduct a survey on bereavement leave for all employers with more than 50 employees.
- We’d like the FMLA to be expanded to include a child’s death as an eligible event, so parents have time to mourn.
- And we’re asking Congress to increase the age of a child to 26 in the law to make it parallel with the Affordable Care Act and tax law.
“As a modern society, we should no longer have to slog through death alone with few resources,” Mulheron said. “We can reimagine a tomorrow where people have the support they need in their own communities — whether urban or frontier America — and where professionals have robust supports, resources and benefits to move this work forward.”
Added Mulheron: “There’s still plenty of work to do, but this is a shared human experience, and people know that. We’re thrilled that offices are listening.”
