Hospice social workers can play a key role in addressing matters of social justice and health care equity when working with patients in underserved populations such as the mentally ill, the LGBTQ+ community and people of color. Lack of funding and interdisciplinary research are among the barriers of improving access to care for these groups, which represent a vast unmet need as well as an untapped market for hospice providers.
Demographic disparities persist in hospice utilization, deepening racial and cultural divides in end-of-life care and causing rising concern in the industry. According to the National Hospice & Palliative Care Organization (NHPCO), 82% of Medicare decedents in 2018 were Caucasian compared to slightly more than 8% who were African American, 7% were Hispanic and 1.8% were Asian, while only 0.4% were Native American.
Issues of equitable access to hospice care have also plagued the LGBTQ+ community, with many reluctant to pursue hospice care out fear of discrimination and general mistrust of the health system. According to a 2018 AARP study, 60% of the LGBTQ+ community are concerned about a lack of sensitivity to their needs among health care providers.
Social workers are a large part of the bridge that connects these underserved communities to hospice care, but they often face obstacles to further inclusion.
“Part of the hospice social worker’s role is to really be the glue and the communication,” said Katherine Supiano, associate professor in the College of Nursing at the University of Utah. “It’s an important part of our ethos to listen, respecting dignity and respecting patient autonomy, to get the larger, fuller story. The pandemic is an opportunity to improve end-of-life care, since hospice and palliative care have been on the frontlines of the pandemic. As a social worker, I see this as a real social justice opportunity not just to transform just the whole world of health care, but also to what we have learned and how to make what we do better. We need social worker’s deeper, richer and collaborative ethos.”
According to Supiano, a Social Work Hospice and Palliative Care Network (SWHPN) board member, a lack of social work funding is an additional impediment to improving accessibility among underserved communities, including those suffering from mental health or substance abuse issues.
“There’s just no funding or work design for those social workers who really need to be deployed to high-need individuals and families such as those with psychosocial needs,” Supiano told Hospice News. “That’s really in our lane. When people with substance abuse disorders get sick and die, they have really different pain control needs than people who don’t have a history of substance use. It’s something that’s under-assessed, not just with the patient, but also the family and caregivers. We really need to have that discussion not just with the patient, but the family.”
Many patients who experience mental illness are reluctant to seek hospice care due to fears that their behavioral health needs will not be addressed. Research from a 2018 supplement to the Journal of American Geriatrics Society indicated significant disparities in the end-of-life experience for patients with serious mental illness.
“One of the big barriers is time. We end up just flying through interdisciplinary team meetings with everyone stretched thin — everybody’s exhausted,” said Supiano. “It’s critical to have an interdisciplinary team that everyone knows each other’s expertise and trusts each other’s execution of that expertise. You want the value of these different perspectives coming together to look at a patient, their family and their disease to take everyone’s perspective. We need to deepen our understanding of each other’s roles.”
Interdisciplinary teams can benefit from additional research to help members understand one another’s roles and achieve greater cohesion.
“With the education and training of social workers, health care providers as a group don’t really understand what that is,” said Stacy Remke, senior teaching specialist of health, disabilities and aging for the School of Social Work at the University of Minnesota and a SWHPN board member. “It’s important that we educate people on what social workers are actually trained and prepared to do. Social workers need to be at the table when issues are discussed because we do have a lot of experience and knowledge about how to address them in the context that we’re in with hospice and palliative care.”