Launching the Lived Experience Bereavement Research Network: A National Dialogue on Grief, Medicine, and Future Bereavement Research
By Joyal Mulheron
Over the last decade, few topics have been more passionately debated among members of the grief community than the medicalization of grief care. Its prominence is hard to miss in conferences, private conversations, and the scientific literature. Most bereaved people express that there is no singular way to grieve, and it is a process that can take place over years, decades, or even a lifetime.
Evermore, the organization I founded, has emerged as the nation’s leader in grief and bereavement policy, shaping how the United States conceptualizes and responds to grief and bereavement. As a bereaved parent myself, and someone who works to anchor our movement in both the lived experience and scientific evidence, I am often asked where Evermore stands on the medicalization of grief.
On the one hand, I understand the need to define and measure when and how grief becomes a “problem” or poses a health risk. Having a clear and consistent protocol to support bereaved people, especially those who are newly bereaved, enables a trained provider to offer preventive care, which is standard medical practice for an array of conditions. But on the other hand, as a bereaved parent, I was not “better” on day 366, just one day following the anniversary of our daughter’s death. For those who have experienced a similar loss, you know, during that time, we were still clinging to life support. Had I sought clinical care, some would have diagnosed me with “Prolonged Grief Disorder,” while others would have affirmed that my yearning, pain, and heartache were normal. Good quality care, or what ‘treatment’ approach you should pursue, should not be a roll-of-the-dice or dependent on which person you call.
This is why we went to Congress in 2022 requesting a directive for the Agency for Healthcare Research and Quality to conduct a systematic review of psychosocial interventions. The review confirms that today’s research falls short.
Changing the Future of Bereavement Research
After thousands of conversations and reading countless scientific papers, I have concluded that bereavement or grief itself is not a medical condition. Medical care is not the most appropriate frontline care, and often reduces grief to a set of symptoms while overlooking the underlying driver of poor health: our loss. At the same time, I see how the chronic lack of quality bereavement care in American communities and clinical settings, combined with a lack of trained care providers, leaves grieving people with few good alternatives for quality care. How do we distinguish between good or bad quality care, especially when we are in such a fragile and vulnerable position?
As society faces escalating public health emergencies associated with bereavement, today’s systems are not sufficiently stemming bereavement’s ill effects. Public systems lack acknowledgment, attention, and quality clinical or community care models that serve bereaved people. Underpinning all of these systems is a scarcity of research that incorporates bereaved people’s voices and real-world factors that matter to our health and well-being. Without input from those living with grief, researchers cannot know what kinds of care models and interventions should be developed and studied.
Arguably, if there is such debate in the field around the medicalization of grief, then today’s bereavement research is not hitting the mark. The narrow focus on what’s “wrong” with us and why we haven’t processed or adapted to our loss more on a specific timeline simply does not resonate with a large portion of people’s lived experience.
This isn’t to say that bereavement research has not yielded any advances, and it should not be considered. Grief, the emotional response to a loss is a unique experience, varies by our individual relationships and the ways death occurred. Finding continuity and setting benchmarks for the adaption and processing of our losses across millions of people is a notable challenge. Research has begun to provide the contours on restoration, offering us the ability to debate specifics, but now is the time to prioritize the lived experience into this emerging field.
Today, we need to look into the future to shape how medical providers can do a better job mitigating the physical manifestations of inordinate stress with which many bereaved people cope, and specifying their role. Just as we do with hypertension, diabetes, and any other chronic conditions, what preventive screenings or care practices are applicable to bereaved people to ensure effective self-care? Are there best practices for diet, exercise, and sleep that can help us cope and manage the stresses we weather?
Launching the Lived Experience Bereavement Research Network
For all these reasons and more, I am thrilled to announce Evermore’s launch of the Lived Experience Bereavement Research Network (LEBRN) with support from a $300,000 funding award through the Eugene Washington PCORI Engagement Awards Program, an initiative of the Patient-Centered Outcomes Research Institute (PCORI).
LEBRN will bring together people with varied backgrounds and expertise, including people who have experienced bereavement themselves — bereaved parents, children, siblings, spouses, and community leaders — alongside bereavement care providers and university researchers.
Over the next two years, we will, in conjunction with people with lived experience, develop principles for engaging bereaved people in patient-centered research and recommend research questions from the perspective of lived experience to guide future comparative clinical effectiveness research on bereavement.
Sign up for LEBRN
As part of LEBRN, Evermore is building a public channel open to all interested parties to provide experiences, opinions, and insights that will help inform and shape our recommendations for future bereavement research. If you are interested in participating in LEBRN’s public dialogues, sign up here.
LEBRN is working with leaders from across the nation, including those with lived experience and who are physicians, researchers, and experts in their respective fields. Our partners include Arizona State University, Columbia University, Refuge in Grief, The Dougy Center, the University of Arizona, the University of Colorado, the University of Miami, the University of South Carolina, the University of South Florida, and others.
We hope you are as excited about this new venture as we are. Now is the time to integrate the perspectives of our lived experiences to help shape the future of bereavement research, ensuring that future policies and practices truly serve those who grieve. Please join us in shaping this future together!