Race, ethnicity and socioeconomic status are the leading differentiating factors fueling disparities in hospice utilization. Data, and associated documentation, can help fuel policy to improve access for underserved populations nationwide.
The nation’s population is growing more racially and ethnically diverse, according to a U.S. Census Bureau report from last year. From 2010 to 2019, the national Asian, Hispanic and African American populations increased by 29.3%, 20% and 11.6% respectively, outpacing Caucasian populations that only saw a 4.3% increase during that time frame.
Members of those demographics are the most underserved throughout the health care system. The hospice community has room to improve in this area as they work to bridge racial divides. Race and socioeconomics represent the largest barriers to hospice and palliative care. African American, Asian and Hispanic patients made up less than 20% of Medicare hospice patients in 2018, while the remaining 80% of beneficiaries were Caucasians, according to the National Hospice and Palliative Care Organization.
Public policy initiatives and skillful use of data will be key as health care providers hone in on equity and inclusion, according to Debra Flores, senior vice president area manager for Kaiser Permanente.
“Systemic racism is real. We must own it, root it out and abolish it, because the impact that it is having on the health of communities, that’s real, too,” said Flores during the recent 2021 C-TAC Policy Forum. “In order for our policymakers to make change, they’ve got to have the right information. Aggressively tackling the challenges with data to back it up does produce impacts on the health of a community in a very positive way. For the health of our communities, the collective ‘we’ must become more fearless with our data.”
Getting to the root of barriers affecting diversity has been a goal of health care providers and policymakers alike. Disparities affecting people of color have been pervasive for decades, but nationwide civil unrest has brought matters of health care equity to the forefront of providers’ minds.
Changes to policy will have to be focused and thoughtful to ensure that it’s broad enough to allow hospices the flexibility to meet each community where they are, according to Tony Kudner, vice president of communications and public affairs of Illinois-based Seasons Hospice & Palliative Care, an AccentCare affiliate.
“In terms of policy updates, it will be interesting to see if the Biden administration appends any models that affect hospices such as value-based insurance design (VBID) or Primary Care First to include an equity component like a quality measure around utilization by historically underserved communities,” Kudner told Hospice News. “Hospice and palliative care providers who could help address health disparities with underserved communities would have a strong leg up if they have a track record of lowering costs and improving quality. If equity in service becomes a quality metric, you can be sure risk-bearing groups would know who is positioned to help them achieve high marks.”
The President Biden administration has indicated that it would put health care equity at the forefront of its strategic direction. Shortly after his inauguration Biden signed an executive order that established a 12-member Health Equity Task Force and stipulated that each federal agency must assess whether its programs and policies perpetuate systemic barriers that affect people of color and other underserved groups.
Gaining a firm footing around the role of social determinants of health has been an important part of improving quality of care and access, with data central to the direction that federal policies can take, according to Darci Graves from the U.S. Centers for Medicare & Medicaid Services (CMS) Office of Minority Health (OMH). OMH has been targeting health care disparities that affect racial and ethnic minorities, people with disabilities, members of the LGBTQ+ community, individuals with limited English proficiency, rural populations, and those who live with persistent poverty.
“Data has been front and center in our work. Ultimately, we can’t do anything in health equity without proper data,” said Graves during the C-TAC summit. “We certainly can’t measure quality and other health outcomes such as safety, effectiveness, patient centeredness, timeliness, efficiency and equity without having the data, and without being able to stratify that data by those populations.”
Graves indicated that providers should develop a standardized way to collect and record patient demographic information including language, culture and social determinants of health needs along with clinical data. This should occur during the initial assessment and throughout the course of care, expanding data collection out into seniors within underserved communities, according to Graves. She also cited the importance of transparency when collecting these data. Providers should help patients and families understand why clinicians are asking these questions and how the information will be used.
Careful documentation of the data providers gather is also an essential consideration that can guide decision making. Building in steps to collect and document these data will be important to ensuring hospice providers find expanded ways to reach these groups, according to associate vice president of health equity and access for Seasons, Nicole McCann-Davis.
“When we are able to really dive deep into who the patient is, making it consistent where everyone is used to asking these questions and everyone is used to getting this data, then we can pull that together and have a better sense of these communities,” McCann-Davis told Hospice News. “Our job is to meet them where they are and make sure that we have access to that type of information so that we can do the best job possible.”