Stephan Kyusuk Chung is the 2017-18 CSUN Research Fellow from the College of Health and Human Development. He is devoting his Fellowship year to disseminating a landmark video he produced—all in Spanish with English subtitles—and conducting further research to help families get timely referrals to hospice when the time comes for end of life care for their loved one. The video was part of the project, “End of Life Care Options for Latinos”, a Latino community outreach project directed toward clinics and hospitals that serve predominantly Latino communities in Southern California.
While information about hospice is widely available for English speakers in the US, more recent immigrants may draw upon different experiences of what hospice means. One particular interview featured in the video provides a prime example of why Chung’s research is so important: a husband whose wife was dying said that in his home country, hospice was a cold, lonely place. So, when his wife became ill, he and his family struggled alone to take care of her at home without help. They hadn’t known that hospice workers were available to come to their home and help them care for her until they spoke with the Coordinator of the Latino program of the Orange County Alzheimer’s Association.
By focusing on under-served and non-English speaking communities where access to information about hospice care is often lacking, Chung is also reaching out to communities where misinformation has led patients and families to shy away from hospice care, potentially leading them to experience greater suffering. “I am reaching out primarily to racial and ethnic minority older adult communities,” Chung said, “I want these communities to know about quality care that hospice providers can offer.” He plans to produce additional videos in Korean and Chinese.
“I have committed myself to research on improving access and quality of end-of-life care,” he said, making a clear distinction between the end-of-life care that hospice provides, and medical care that is meant to prolong life. When nothing more can be done toward healing, hospice can provide a nurturing environment and a peaceful end-of-life experience. “When people learn about hospice care, they discover there is comfort care,” Chung added.
Speaking with tact about the delicate subject of dying, Chung stresses how crucial it is for patients and families to understand the nature of hospice care. Hospice care can take place not only in the hospital, but also at home. In some cases, a hospice worker will come to the home once a week, sometimes more frequently and in other cases, shifts of hospice workers may remain in the home around the clock as the end of life is reached.
“As a health services researcher, I am also interested in the evaluation side of hospice care,” he said. “I want to support health administrators in developing and monitoring measures for quality of end-of-life care. The data we gather will contribute to the US Centers for Medicare and Medicaid Services Hospice Quality Reporting Program to improve quality of care overall.” Mandated by the Affordable Care Act of 2010, Hospice Quality Reporting makes it possible to track and evaluate data submitted by hospices. It also provides survey data on consumer satisfaction and assessment of various hospice programs.
Chung is especially concerned with the increase in cases where minority patients who had been enrolled in hospice may have been dis-enrolled from hospice when they were still in need of services. “Community members need to know to look for hospice agencies that are reliable and have resources,” he said.
Research has shown that non-whites are four times more likely than whites to have unplanned hospitalization during hospice. “It can be traumatic to try to save a life when the patient has begun the process of passing away,” Chung said. “When we see a loved one suffering, there is an instinct that makes us want to call for help. But calling 911 is a mistake when the end of life is nearing because it puts life-saving procedures into motion, which is not always what will most benefit the patient.”
According to federal regulation, a hospice must first have a contract with a hospital/skilled nursing facility before making a referral to the General Inpatient Level (GIP) of hospice care. GIP is short-term inpatient care in a hospital, skilled nursing facility, or a hospice-operated inpatient facility for those suffering from acute pain and uncomfortable symptoms that a hospice cannot adequately manage in a home setting.
In a study using data from the 2007 National Home and Hospice Care Survey, Chung found that 32% of hospices had no contract with any hospital and half of them did not have a contract with a skilled nursing facility either. “This disconnect may give rise to situations where hospices discharge patients in need of acute pain and symptom management because they are unable to contract with an institution for GIP provision,” he concluded. His contribution was cited in a 2014 Washington Post series of investigative articles under ‘Business of Hospice’.
Chung’s next step is to compare discharge rates by hospice providers with GIP referrals and by those without GIP referrals using a retrospective cohort study of SEER-Medicare data. “There is a lack of research on the association between hospice failure to provide GIP and live discharge rates,” he said. “My goals are to provide and share information that can lead to positive changes in hospice care in the US.”
Stephan Kyusuk Chung, PhD, is the 2017-2018 CSUN Research Fellow from the College of Health and Human Development. He is a Professor in the Health Administration Program in the Department of Health Sciences, College of Health and Human Development at California State University, Northridge. For twenty years, he has conducted research on issues related to health disparities, in particular end-of-life care in the medically under-served communities. Learn more about Dr. Chung.
The CSUN Research Fellows Program was created and is funded collaboratively by the Office of the Provost, the Colleges and the Library. Nine competitive research fellowships, from each college and the Library, are awarded to CSUN faculty. To be selected as a California State University, Northridge Research Fellow is an appointment of distinction. Learn more about the CSUN Research Fellows Program.