Stakeholders in end-of-life and serious illness care are urging payers to develop a national standardized quality assessment tool for hospices to bridge gaps in health equity.
Senior care association LeadingAge recently penned a letter to the U.S. Centers for Medicare & Medicaid Services (CMS) calling on the agency to formalize data collection standards for hospices to inform development of quality measures around health equity, among other actions.
Creating a standardized patient data collection system would go a long way towards finding and filling cracks in hospice quality and access among underserved populations, according to Katy Barnett, director of home care and hospice operations at LeadingAge.
“Getting data over time on things like race, ethnicity, health literacy, social determinants of health and transportation needs could help form how we can move health equity,” Barnett told Hospice News. “[It] gives us a broader picture of people who access hospice and see where breakdowns in populations occur. We can compare that data to quality outcomes in the last days of life. Right now, we know a little bit, but we don’t know enough to really improve quality and find those gaps.”
Currently, CMS uses the Hospice Item Set (HIS) among its barometers for quality. The HIS system extracts item set data from a patient’s medical record using a standardized mechanism.
The agency also uses Consumer Assessment of Healthcare Providers and Systems (CAHPS) survey results as an important source of hospice quality data. CMS requires that hospices send CAHPS surveys to families following a patient’s death to gauge their satisfaction with the services they’ve received, which the agency uses to determine a provider’s star rating.
New quality measurement methodologies are in the works and in the early days of implementation, including the Hospice Care Index and the Hospice Outcomes & Patient Evaluation (HOPE) tool. The HOPE tool will replace the HIS system, and is currently in a pilot testing stage. It will measure aspects of hospice care at different points in the patient’s experience.
CMS indicated that HOPE’s dual objectives are to provide data for the Hospice Quality Reporting Program through standardized data collection and provide clinical data that may inform potential future changes to Medicare hospice payments. CMS is working to develop measures for the HOPE reporting program that are compliant with the agency’s Meaningful Measures Initiative.
But current quality reporting requirements and measurements in hospice fall short of what’s needed to paint the full picture of patient and family experiences, especially among underserved populations, according to Barnett.
“There’s a lot of differentiation between care at one hospice and another, and this makes it difficult to collect consistent information about populations,” Barnett said. “Hospice is behind in a lot of the measurement categories compared to areas like skilled nursing or home health that have had measures for a long time. Having an assessment tool where everybody is capturing that information in the same exact way is really important to getting a broad sense of who this population is, and how we’re doing on the quality of care that they receive.”
Developing a national quality assessment tool could help break down access barriers among underserved populations, Barnett explained. If providers had a standardized way to capture racial, cultural and ethnic background information, that data could help pinpoint where and how to hone health equity focus, she added.
Health care disparities have long-plagued hospice, but awareness of these problems has heightened in recent years as more public discourse turned towards these issues and as COVID-19 exposed more cracks in the system.
African Americans, Asians and Hispanics combined made up less than 20% of all Medicare hospice patients in 2018, while Caucasians represented the remaining 80%, according to the National Hospice and Palliative Care Organization.
Misconceptions about end-of-life care, as well as fear and mistrust of the health care system are among the biggest barriers to hospice among populations of color.
To better understand the barriers, LeadingAge called on CMS to develop a technical expert panel that would create a structural health equity quality measure specific to hospice and home health providers that could be integrated into the HOPE tool. The forthcoming quality assessment tool is currently in a beta testing phase, according to Barnett.
“Hospice is this unique space where you’re trying to make somebody comfortable at the end of their life,” Barnett told Hospice News. “There’s all these different cultural areas of difference, and we really want to make sure the technical expert panel listens to hospices who have done the work to understand different populations. The last thing we want is unintended consequences of measurement to happen. Hearing from different communities gives a game plan for developing these structural measures.”