By Joyal Mulheron<\/em><\/p>\n 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.\u00a0<\/span><\/p>\n Evermore, the organization I founded, has emerged as the nation\u2019s 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.<\/span><\/p>\n On the one hand, I understand the need to define and measure when and how grief becomes a \u201cproblem\u201d 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 \u201cbetter\u201d on day 366, just one day following the anniversary of our daughter\u2019s 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 \u201cProlonged Grief Disorder,\u201d while others would have affirmed that my yearning, pain, and heartache were normal. Good quality care, or what \u2018treatment\u2019 approach you should pursue, should not be a roll-of-the-dice or dependent on which person you call.\u00a0<\/span><\/p>\n This is why <\/span>we went to Congress in 2022 requesting a directive for the <\/span>Agency for Healthcare Research and Quality<\/span><\/a> to conduct a <\/span>systematic review of psychosocial interventions<\/span><\/a>. The review confirms that today\u2019s research falls short. <\/span><\/p>\n 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?\u00a0<\/span><\/p>\n As society faces escalating public health emergencies associated with bereavement, today\u2019s systems are not sufficiently stemming bereavement\u2019s 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.<\/span><\/p>\n Arguably, if there is such debate in the field around the medicalization of grief, then today\u2019s bereavement research is not hitting the mark. The narrow focus on what\u2019s \u201cwrong\u201d with us and why we haven\u2019t processed or adapted to our loss more on a specific timeline simply does not resonate with a large portion of people’s lived experience.\u00a0<\/span><\/p>\n This isn\u2019t 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.\u00a0<\/span><\/p>\n 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?<\/span><\/p>\n For all these reasons and more, I am thrilled to announce Evermore\u2019s launch of the Lived Experience Bereavement Research Network (LEBRN)<\/a> with support from a $300,000 funding award through the Eugene Washington PCORI Engagement Awards\u00a0 Program, an initiative of the Patient-Centered Outcomes Research Institute (PCORI).<\/span><\/p>\n LEBRN will bring together people with varied backgrounds and expertise, including people who have experienced bereavement themselves \u2014 bereaved parents, children, siblings, spouses, and community leaders \u2014 alongside bereavement care providers and university researchers.<\/span><\/p>\nChanging the Future of Bereavement Research<\/h3>\n
Launching the Lived Experience Bereavement Research Network<\/h3>\n