The lack of standardized quality measures for palliative care complicates efforts to expand access to those services. This means community-based palliative care providers have limited ways to benchmark their performance and further demonstrate their value.

The growing need for this type of care has led providers and industry groups to pump up the volume of their calls for a dedicated palliative care benefit within Medicare. While some stakeholders are optimistic, to date, no such model or demonstration has been announced.

The ability to benchmark data on quality metrics could help providers educate policymakers on the value of their services, but the lack of standardized measures creates a barrier.

“It’s actually a really big issue in our field — trying to figure out if everyone is on the same page and reporting the same data in the same way,” Nathan Goldstein, M.D., professor of geriatrics and palliative medicine for the Icahn School of Medicine at Mount Sinai, told Hospice News. “The most basic element here is that quality measurement is significant to care and plays a critical role in quality of care and payment reform. We need to promote the implementation of clinical practice guidelines to ensure care that’s consistent, high quality, and really guides the development and structure of new and existing palliative care.”

Hospices provide roughly 50% of home- and community-based palliative care nationwide, according to 2019 research by the Center to Advance Palliative Care (CAPC).

Providers have seen rising demand for palliative care during the pandemic. More patients and families have sought out these services — a trend that began long before COVID-19 and has since accelerated. 

Robust quality metrics will be crucial to the development of a palliative care benefit at the federal level. A community-based palliative care benefit would likely develop as a Center for Medicare & Medicaid Innovation (CMMI) demonstration project. Patients would not need a six-month terminal prognosis to receive services.

Some stakeholders in the palliative care space are advocating for better quality measurement.

The National Coalition for Hospice & Palliative Care developed two new patient-reported outcome performance measures for community-based palliative care. These include how much patients felt heard and understood and whether patients received the help they wanted for their pain.

CMS funded the Palliative Care Measures Project with a three-year $5.5 million grant. The project wrapped in December 2021.

By using these measures, providers can more concretely gauge palliative care patients’ experiences, according to Goldstein.

Additional data such as care settings, patient geographic locations and clinical staff workloads can give providers insights into how their palliative program operates, Maggie Rogers, director of research and analytics at CAPC, said at the American Academy of Hospice and Palliative Medicine and Hospice and Palliative Nurses Association 2022 Annual Assembly of Hospice and Palliative Care.

“In order to have a balanced view of your palliative care program, its benefits and its impact, you need to utilize a full spectrum of measures,” Rogers said. “That’s the secret sauce. How your program is structured is going to impact your operations and impact patient outcomes. Structure and process data, as well as clinical quality data, allows [providers] to build and sustain the best possible team and provide the best care for their patients.”

Collecting data on patient populations, care settings and referral sources allows providers to improve quality, according to Steven Pantilat, M.D., chief of the division of palliative medicine and professor of clinical medicine at the University of California, San Francisco. Pantilat is also board chair for the Palliative Care Quality Collaborative.

Collaborating with other providers to gather this data can also foster a better understanding of common challenges, enabling organizations to develop solutions Pantilat stated during the assembly.

“The value of working together is to improve quality to really understand the quality of care that we provide,” Pantilat said. “It helps us understand a little bit more about the patient population that we’re serving and the unique needs of our patient population … We can reduce the trial and error involved in trying to improve quality. Ultimately, [this] can help us identify what best practices are.”