Lukas Flippo, Photo Editor

The Solomon Center for Health Law and Policy at Yale and the Center to Advance Palliative Care, or CAPC, have developed a new tool that will make it easier to conduct palliative care research and advocacy.

Palliative care is specialized medical care for individuals with serious illnesses that focuses on improving quality of life and lessening suffering. The Palliative Care Policy GPS created by the Solomon Center and CAPC compiles information about palliative care-related bills and laws in a range of categories, from clinical skill-building to public awareness to payment. It allows users to search for legislation by year, bill status and geographic location. According to Eugene Rusyn LAW ’17, editor-in-chief of the GPS, this database is a unique new tool in the realm of palliative care policy.

“Over the past 10 years, there’s been a lot of policy development throughout the country when it comes to palliative care,” Rusyn told the News. “[But] it’s been really hard to know what’s going on, just because no one was really keeping track in one place in a regularly updated way what the states have been up to.”

Stacie Sinclair, CAPC associate director for policy and health care transformation and a member of the GPS leadership team, explained that people often confuse palliative care with hospice, which is meant for people with terminal illnesses. While hospice is a type of palliative care, the latter also encompasses care for people with any serious condition and is often provided in tandem with curative care.

The research team for the Policy GPS included students from Yale Law School, the Yale School of Public Health and the Sacred Heart University School of Social Work. According to Stephanie Rice LAW ’23, she and the other student researchers used the legal database LexisNexis to search every state for legislation that contained certain keywords like “palliative” or “long-term care,” then sorted through the results to find bills that should be included in the GPS. The database covers bills in every stage of the legislative process and from all 50 states, as well as United States territories, the Indian Health Service and Veterans Affairs. 

“The reason we want to track not just bills that become laws but also bills that are in process or that have failed is because often, what ends up happening in the policymaking space is that a really innovative idea may be introduced in one place, and fail in that place, before being taken up elsewhere and succeeding,” Rusyn said. “And if we aren’t tracking for the bills that don’t quite make it across the finish line, we might lose some of those really important and innovative policy ideas.”

In addition to the legal research, work on the GPS included a significant design component. Rusyn said the goal was to make the database accessible to patients and family members who might not have a detailed understanding of the legislative process. They took inspiration from other organizations that regularly build state-by-state policy trackers, particularly the National Conference of State Legislatures.

The team hopes that the GPS will be helpful for future researchers interested in palliative care. Before the creation of the GPS, there was no centralized database of palliative care policy, meaning researchers had to collect data from each individual state before conducting broader analyses, according to Dena Schulman-Green, associate professor at NYU Rory Meyers College of Nursing and a member of the Palliative Care GPS Team.

Rice said the research team has already identified potential research topics that they can use the database to investigate, including how states fund palliative care and how the opioid epidemic has impacted palliative care policy.

“Just knowing that your dataset is in one place, is up to date and clean is of great value to researchers,” Schulman-Green said. “If that’s not there … and you have to first start pulling together the database to then first analyze it, we often don’t have the time or the ability to fold that into what we’re being funded for. The expectation is often that you’ll have done that legwork in advance.”

The database is also a tool for policymakers and policy advocates. Sinclair said that the GPS will help advocates see what others have proposed or passed instead of having to invent entirely new ideas. She noted that states regularly take inspiration from other states that have already dealt with the “growing pains” of an innovative policy. 

This version of the database is only the beginning, its creators said. According to Rusyn, the team plans to expand the database by including legislation from as far back as 2010. The tool currently only dates back to 2017 at the earliest. They also want to incorporate federal policy, not just statewide legislation, and to cover regulations, not just laws. To do all this, they plan on partially automating their search process.

The GPS came out at a time when palliative care was receiving renewed attention due to the pandemic.

“I think the value of palliative care really came to the forefront in a way that it hadn’t before,” Sinclair said. “Patients were very, very sick. There wasn’t a lot of information. It was incredibly scary; their families weren’t allowed to see them. … In many instances, it was the palliative care teams that were providing that bridge to the person in the hospital and the families at home.”

Between 2000 and 2019, the percentage of hospitals with 50 or more beds that had a palliative care program increased from 25 to 82 percent, according to the GPS website.

SADIE BOGRAD