Hospices and other grief support providers across various countries have increasingly recognized a host of unmet needs among bereaved families. A diverse range of strategies are being employed to address the challenges.

Many grieving families across the globe do not access the full scope of services and supportive resources available in their local communities, according to Kelly Sammon, founder and CEO of Grieving Gracefully. The Ontario, Canada-based grief coaching company offers services through a virtual platform available worldwide. Sammon has worked with bereaved communities and grief and end-of-life care professionals in Europe, the United States and Canada, with more countries on the horizon.

A significant gap exists between access and awareness, which results in complicated and difficult grieving experiences, Sammon said. Hospices and other bereavement care providers need stronger communication and outreach engagement efforts to better address families’ emotional, practical and psychosocial needs, she stated.

“It’s [about] having communication strategies and guidance when navigating through grief,” Sammon told Hospice News. “There’s a big disconnect, that missing component between the incredible care for patients and what’s in place for families. There’s a bit of a block when it comes to the bereavement programs. It’s very important that they are community-based and get involved with others who help people with grief to come together and utilize one another’s strengths to really support these families going forward. Being that community-based resource is so very crucial.”

Common missing links

Hospices worldwide often reach out too soon following the loss of a loved one, though some also lack continuous communication as time passes, Sammon said. More consistent communication is key, as emotions and needs often change over time. Important to improving grieving experiences is having a system in place that allows for consistent engagement, emotional support and connection to local financial, legal or logistical resources.

More innovative bereavement approaches are taking shape in recent years, according to Sammon. Hospices and other grief professionals are increasingly employing more virtual avenues of communication and support including different types of individual and group therapies, online communities and guided exercises.

“Grief is so overwhelming,” Sammon said. “People need community and don’t know where to start to build those pillars of support. They need help peeling back some of the layers. It’s being transparent and providing an environment that people feel safe to be in and learn to be successful in carrying their grief. Having virtual communication and guidance outside of a physical location is important.”

Grief takes on many forms across different cultures, according to Barry Koch and Jason Zamer, co-founders of TGBeyond. The organization was founded in 2018 to increase death literacy and to help normalize end-of-life discussions. TGBeyond’s projects are centered around expanding education and entertainment opportunities related to the end of life and death.

Some cultures and belief systems are more “death positive” compared to others, which can play an important role in grief outcomes, Koch indicated.

“Everybody honors their dead in some way shape or form, whether it’s a religious or cultural ritual,” Koch said. “In any scenario, a family has to rearrange their affairs. And then at some point, people find themselves living their life, whatever that looks like without that person. There probably are universal applications …”

Among TGBeyond’s most recent projects was the documentary “A Butterfly Has Been Released.” The film follows the end-of-life journey of Allyson Z., a hospice nurse who provided care to patients and their families in Atlanta for more than 20 years prior to her terminal diagnosis.

The documentary was featured in a new caregiving education and awareness program from the Hospice Foundation of America (HFA). The new education initiative is designed to better facilitate conversations about the end of life, dying and death and improve these experiences for professionals, patients and families.

Complicated and prolonged grief can impact a small portion of individuals, but it can bring tremendous and profound lasting impacts, according to Koch.

Strong bereavement support involves understanding that grief can have a long arch for many individuals, Zamer said.

“Grief is going to come and it’s going to go,” Zamer told Hospice News. “It’s this thing that is more nebulous in the time frame. We’re trying to avoid broken relationships and the stress of the death of a loved one. We’re thinking about this across the entire journey. At some point your task list is gone … But that doesn’t mean that you are no longer living with the memories of that person who has died.”

Building stronger support

Many families value consistent outreach, particularly as immediate support tapers off after a death, according to Keely Rhiannon, lead grief counselor at Angela Hospice. The Michigan-based hospice’s bereavement services include individualized assessments and grief counseling, adult and children support groups, memorial and remembrance events, educational mailings and referrals to community partners when additional care needs arise.

Strong communication can be particularly important when it comes to providing trauma-informed and culturally-inclusive bereavement, Rhiannon stated.

Hospices have increasingly expanded the depth and reach of their services in response to growing demand for trauma-informed grief support. Trauma-related losses often fall outside of the purview of the terminally ill patients that hospices typically serve. However, many hospices extend bereavement beyond their patients’ families and are uniquely equipped to offer substantial interdisciplinary support.

Bereavement programs must be grounded in flexibility, accessibility, compassion and respect to meet the evolving needs of families, Rhiannon said.

“One of the most significant unmet needs we see is sustained support beyond the early weeks following a loss,” Rhiannon told Hospice News in an email. “There is also a growing need for trauma-informed and culturally responsive grief care, as well as education around how grief impacts the brain and body. Strengthening bereavement programs requires not only direct services, but [also] intentional investment in community connection … When programs equip communities with language, understanding and permission to stay present, support can ripple outward rather than ending at the hospice door.”

Recognizing that grief is not a “one-size-fits-all experience” is an important part of improving outcomes, said Cynthia Stanton, bereavement coordinator of Croí Health. Formerly Norwell Visiting Nurse Association (NVNA) and Hospice, the Boston-based organization recently rebranded to better reflect its diversifying scope of services. Croí Health provides hospice, palliative care and home health.

The organization’s bereavement program includes short-term grief counseling, annual remembrance services, educational mailings, follow-up assessment calls and a variety of support groups that address different grief experiences.

Hospices need to invest in staff education and behavioral health support, as well as in community engagement, Stanton stated. These are core building blocks of a sustainable bereavement program that meets a range of diverse needs, she said.

Key elements include dedicated staffing support with balanced caseloads and funding for professional development. Bereavement professionals need access to training on best practices, emerging grief care models and trauma-informed approaches, according to Stanton. Regular opportunities for interdisciplinary team collaboration are also crucial, particularly when it comes to supporting families with complex grief, trauma histories or high-risk needs.

“Ensuring effective bereavement care requires an organizational commitment to education, collaboration and sustainability,” Stanton told Hospice News in an email. “Equally important is a culture that recognizes the emotional impact of bereavement work and supports staff well-being. This includes sensitivity to workload balance, employee wellness and acknowledgment that sustained, compassionate care for grieving families depends on staff feeling supported, valued and resourced in their roles.”