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.
Demographic disparities have persisted 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 often face challenges when seeking avenues of further inclusion. The COVID-19 outbreak has additionally strained issues of equitable care access, hitting high-risk hospice and palliative care patients long-term facilities, nursing homes and hospitals hardest out of the need to social distance during the pandemic.
“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, who practices clinical social work and psychotherapy care for older adults and is a Social Work Hospice and Palliative Care Network (SWHPN) board member, a lack of funding support is an additional impediment social workers face to boost accessibility among underserved communities, including those suffering with 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 use 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 as part of that family assessment.”
Many patients who experience mental illness are often 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 persistent mental illnesses.
Social workers aiming to close gaps in health care equity are often working against the clock with limited time spent consulting with clinicians, nurses and care teams under workforce shortages and staff burnout.
“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. “When we’re exhausted and we’re stretched thin, it’s easy to miss things. It’s kind of a false expectation to just say let’s slow it down so we can do it better. It’s critical to have an interdisciplinary team that everyone knows each other’s expertise and trust each other’s extra 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 and not just voice it, but integrate it into leave a very clear plan of who’s going to do what and how they’re going to report back. We need to deepen our understanding of each other’s roles.”
An additional barrier hospice social workers experience is a lack of interdisciplinary research to help care teams understand one another’s roles and achieve greater cohesions of collaborated end-of-life care.
“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. Remke is also 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. We need to examine their roles within teams and then we also need to advocate at the reimbursement level. We need to be thinking about this creatively.”
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October 30, 2020 at 04:39PM
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Hospice Social Workers Improve Health Care Equity, Justice - Hospice News
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