Social workers have an increasingly important role to play in breaking down barriers among underserved populations, including misconceptions about hospice that can deter or dampen utilization.
Social workers can be pivotal to shaping care delivery approaches and community outreach efforts that improve hospice access and understanding, according to Arlen Gaines, licensed clinical social worker and director of hospice social services at Maryland-based Jewish Social Service Agency (JSSA). Gaines has worked in the hospice field for more than 15 years and is currently a PhD candidate in palliative care at the University of Maryland, Baltimore.
Some of the nation’s most underserved communities can hold a wealth of diverse faith backgrounds and beliefs. The nature of social workers’ roles on an interdisciplinary hospice team give them a unique, inside look into how faith, religion and belief systems can impact understanding of end-of-life care, Gaines said.
“Social workers play a pivotal role in learning about the support systems of the families they serve, as that knowledge becomes the foundation for an individualized plan of care,” Gaines told Hospice News in an email. “It’s critical when navigating end-of-life conversations in diverse, underserved communities that we employ a thoughtful and culturally sensitive approach. In collaboration with the professional chaplains on the team, the hospice social workers can help facilitate communication within the family system and support involvement with their support system, which often includes their faith community.”
Addressing hospice misconceptions among underserved groups
Hospice providers have faced an ongoing struggle to communicate and define the scope of their interdisciplinary services not only to terminally ill patients, but also referring clinicians across the continuum.
Case in point, roughly 38% of adults nationwide conflated hospice with palliative in a March 2022 study published in the Journal of General Internal Medicine.
Improving public awareness and other health care providers’ understanding around the value of hospice care is among this year’s greatest challenges, according to 15% of respondents in Hospice News’ 2024 Outlook Survey, produced in partnership with Homecare Homebase. Nearly two-thirds of the participants were c-suite leaders, vice presidents or directors. There were 143 respondents in total.
Embattled misunderstandings about the nature of hospice can be an even greater feat when overcoming language and cultural barriers in diverse communities, according to Joseph Bleiberg, lead licensed social worker at VNS Health. The New York-based health system offers home care, hospice and behavioral health, among other services.
“Social workers are advocates for patient-centered care,” Bleiberg told Hospice News. “We’re doing a lot of anticipatory grief and supportive counseling, and sometimes it’s almost like we’re the interpreter communicating patient and family needs. The added challenges can come when there are cultural and language barriers to the conversation. We have to be skilled in how we have that end-of-life conversation in a way that’s appropriate for them.”
Social workers’ role in shaping community outreach programs
Social workers are well-positioned to support patients and families across diverse backgrounds, according to Gaines. Their role is rooted in assessing the person within their environment and modeling conversational approaches around death and dying with language that is congruent with the family’s belief system, she said.
Approaching end-of-life conversations with sensitivity, avoiding medical jargon and using language that resonates with the diversity of a community can foster rapport building and trust, Gaines said.
Social workers are also integral to creating sustainable community partnerships and developing outreach programs that can improve access to hospice, she added.
These interdisciplinary team members have the potential to take the lead and help facilitate conversations with different faith and cultural groups, as well as provide education, according to Gaines. These partnerships can help social workers better assess the social determinants of health alongside belief systems and the impact these have on health equity – important ties that must be made within the community setting versus clinical, she stated.
“Successful partnerships involve not just the provision of care, but truly understanding the social and community context that underlies care to diverse groups,” Gaines told Hospice News. “We need to work with community stakeholders and think about care choices with the community, not just for the community. Social workers bring training and expertise in relationship building, communication, cultural competence and effective collaboration, all of which can help hospices shape community outreach efforts.”
Matching patients and families with staff that are representative of their culture and speak their language is one key to improving hospice understanding, according to Bleiberg. Social workers can act as liaisons that help connect terminally ill patients with care and services that align with their beliefs and goals of care, he said.
Social workers build relationships with patients and families across diverse cultural and faith backgrounds, often having a deeper understanding around those involved in decision-making for end-of-life care, Bleiberg added. For instance, those involved may fall outside the scope of the traditional family unit to also include spiritual leaders, he stated.
Having staff that are representative of the community is a key part of learning where the gaps of hospice understanding exist and how to address them, Bleiberg said.
“Having staff from all faiths, backgrounds, languages and cultures is often a huge help,” Blieberg said. “If we can match patients and families with a staff member they relate to, [then] we really can focus on the awareness that various cultures and religions play and the different health care proxies that might be involved. If they are Jewish Orthodox, for example, they have a Halachic living will in which a rabbi is named to be consulted when making health care decisions. So, it’s really having a good awareness that there’s a lot of different ways of having and starting the end-of-life care conversation and building trust with that group.”