A few years back, Jay Shen, an expert in health services research and policy, was sifting through materials for a grant submission. He came across a color-coded map showing all the states across the United States that had received grants from a prestigious federal research organization.
Nevada was a stark white — one of the few states state that had not received funding from the Patient-Centered Outcomes Research Institute (PCORI). It was an a-ha moment for the associate dean of the UNLV School of Community Health Sciences.
“That’s when I saw an opportunity to begin small and grow awareness about palliative care.”
After all, Nevada has a robustly growing population over the age of 65. He knew much more could be done to enhance the quality of life for patients both in the clinics treating them and throughout the communities they’re connected with.
Shen leads a collaborative research team with Catherine Dingley, an associate professor in the UNLV School of Nursing, and Dr. Ji Yoo, who specializes in internal medicine and geriatrics at the UNLV School of Medicine. Since 2015, the team has been funded by PCORI four times and remains the only research team in the state to have received financial support from the organization.
Their latest proposal brought in the $250,000 Eugene Washington Community Engagement Award and is aimed at Nevada’s Asian communities, which tend to not access the palliative care resources available to them.
Explaining Palliative Care
Palliative care focuses on improving a patient’s quality of life by relieving symptoms and stress caused by serious illnesses. According to Dingley, many people, regardless of cultural upbringing, mistakenly consider palliative care as an end-of-life option only.
“When we talk about palliative care, we’re actually referring to a network of physicians, nurses, and other healthcare professionals who provide specialized treatment and form an extra layer of support,” Dingley said. “This type of care is appropriate for patients of any age during any stage of serious illness and can be administered along with curative treatments.
“In addition to treating and managing symptoms, the palliative care team spends extra time communicating with the patient and his or her family about treatment options and choices as well as goals. Then, the team ensures the patient’s primary care providers are aware of and understand those goals and decisions.”
Peer-reviewed evidence shows palliative care can decrease emergency room visits and additional care costs, Dingley noted. In other states, patients with good palliative care networks receive the help they need sooner, which mitigates higher costs to treat symptoms that reach critical levels.
The Need in Nevada
According to the UNLV Center for Democratic Culture, Nevada had the second largest population increase (47.9 percent) of persons aged 65 and older between 1999 and 2009. By 2030, that population is projected to account for 18.6 percent of the total population.
“Greater age yields increased incidents of health issues and chronic conditions,” Yoo said. “You can live with these ailments at a high quality of life if you have the medical, social, and spiritual support mechanisms in place.
“This is the heart of palliative care: a team-based approach to provide social work, chaplain services, and physician and nurse care, as well as hospice services if needed. Palliative care is a good fit in Nevada because of this growing, older population.”
A Pipeline to Research Success
Choosing palliative care as a research topic began when Shen and Abbie Kirkendall, a former UNLV social work professor, were considering the needs of Nevadans.
In 2015, Shen and Kirkendall submitted their first proposal for PCORI funding. They focused first on clinical settings and began building Nevada’s patient-centered palliative care network through their research. Dignity Health Systems became the first community partner and was soon joined by Nevada Palliative Care/Infinity Hospice, Elaine Wynn Palliative Care Program at Nathan Adelson Hospice, and Sunrise Hospital, as well as individual patients and caregivers.
Though Kirkendall has since left UNLV, the research team has continued to expand, as Dingley joined midway through the Tier I grant and continued through Tiers II, III, and the current grant, as project co-lead. Yoo joined the team during Tier II and provides a strong clinical perspective. He is the co-director of the education core of the current project.
The success of one grant led to another and then another. Their work asked some important clinical questions: How did patients with chronic obstructive pulmonary disease fare when managed by palliative care specialists compared to those who were not? Did patients in intensive care do better with an in-house care team than those who received care from outside consultants? They also explored PTSD support in the context of palliative care and the risks and benefits of phone-based, nurse-led coordination of care.
Partnering with Community Groups
For their latest study, the team is shifting from clinical issues to addressing the reasons that populations don’t access palliative care. The UNLV team’s early studies identified the Asian and Hispanic communities as the top two minority groups in Nevada who do not use palliative care, Shen noted.
“Through a partnership with the Asian Community Development Council, we learned that Asian communities in Southern Nevada may not have adequate levels of awareness and knowledge on palliative care and its important role in patient care and satisfaction,” Shen said. “Some of the underlying factors may relate to culture, tradition, and physician referral,” Yoo agreed.
They worked with their main partner, the Asian Community Development Council, and with the Korean American Medical Association and Filipino Nursing Association to prepare the proposal.
The UNLV project was among the six nationwide that received the Eugene Washington Community Engagement Award in 2018. The team’s consistent track record of strong community partnerships and engagement helped it stand out among the many proposals received, PCORI officials noted.
Shen credits doctoral student Pearl Kim with helping to make those inroads. “She worked extremely hard as the project coordinator for the [previous] projects and made huge contributions to the latest award application by using her strong connections and experience with Asian communities.”
The UNLV team currently is conducting a needs assessment and developing culturally appropriate educational programs through outreach at numerous cultural events. In addition, the team is examining provider understanding and practice patterns related to palliative care in the Asian community.
In the second year, they will offer educational programs and will measure how information, knowledge, and use of palliative care have increased in Southern Nevada as a result.
Shen and his team intend to expand their work to other populations during the coming years. Their project aims to provide individuals and families with the evidence they need to make better-informed healthcare decisions regarding palliative care and advance care planning and improve the health and wellbeing of Asian populations as well as other populations in Nevada. The outcomes and lessons learned in Nevada can also be disseminated widely and may have implications for diverse communities nationwide and beyond.