Dr. Chung's Health Disparities Research
Project 1: Palliative Care Need Assessment for African American Elders with Advanced Dementia
Project 2: Preference Setting of Hospice Care Among Minority Elders
- College of Health and Human Services' Project Director: Dr. Kyusuk Chung
Disparity in Hospice Care
In 2004, about 800,000 Medicare beneficiaries over the age of 65 used hospice care. This number accounted for 31 percent of all Medicare decedents in 2004. Underutilization of hospice care among minority elderly is well known. Non-Hispanic whites are overrepresented among hospice care users; Non-Hispanic whites accounted for 89.5% of Medicare hospice users, compared to 7.7%, 1.3% and 0.6% (African Americans, Hispanics and Asians, respectively).
Hospice Research under Project EXPORT
These disparities in hospice care were the focus of Dr. Kyusuk Chung’s research for the College of Health and Human Services under Project EXPORT, in a study titled “Factors Affecting Decisions on When to Enter Hospice: Minority Elderly Relying on Formal Caregivers.”
This research explored factors that may influence decisions to enter hospice among minority elderly who rely on formal caregivers for some or all of their care. The study found that prior knowledge about and/or experiences with hospice care influenced the decision to seek hospice admission. The study also found that either of the following two factors appears to determine whether an individual will receive hospice in a private residence or in a facility: 1) living alone at the time of diagnosis of the terminal disease or 2) residing in a facility before hospice enrollment.
Five subjects who had to be placed in facilities from private residence for hospice care enrollment had lived alone. Four subjects were able to stay at home with family members supported by part-time caregivers from a local aging agency or adult day care.
The study found a high prevalence of dementia among the facility-based subjects. Their long stay in hospice care may indicate a need for more appropriate alternatives for dementia-stricken elderly and their families. For example, instead of hospice care designed for people at the end of life, there may be a need for specialized palliative care for people suffering from dementia.
Continuing Research under Building Capacity in Health Disparities Research
Two new hospice care research proposals are under development with HDR support. Both build on and expand Dr. Chung’s research in hospice care disparities under Project EXPORT.
Palliative Care Need Assessment for African American Elders with Advanced Dementia
The first proposal, titled “Palliative Care Need Assessment for African American Elders with Advanced Dementia,” is based on the finding from project: EXPORT: the high prevalence of dementia among the facility-based subjects and their long stay in hospice care. Similarly, a national survey study indicates that African Americans tend to stay longer in hospice care than other racial/ethnic groups. For example, the 90th percentile of hospice enrollment (days) for African Americans was three times higher than those for whites and Hispanics. This may indicate a need for more appropriate alternatives for dementia-stricken African American elderly and their families. Dr. Chung will survey African American elders suffering with advanced dementia in nursing homes or assisted living facilities and examine a need for specialized palliative care for African American elders with advanced dementia at the end of life.
Preference Setting of Hospice Care among Minority Elders
The second proposal, titled “Preference Setting of Hospice Care among Minority Elders,” is designed to examine the racial difference in preference of settings of care while under hospice care: 1) private residence; 2) nursing homes and assisted living facilities (ALFs); 3) hospice residence (HR), a home-like setting in which hospice staff members provide hospice care. The HR is a residential facility operated by a hospice and considered by a patient who lives there to be his or her primary “home.” A hospice staff member fills the role of family caregiver with provision of residential care for 24 hours a day, 7 days a week. It is a homelike living facility for the benefit of patients lacking caregivers to complement hospice care in their own homes. It is intended to prevent hospitalization and/or nursing home placement. Dr. Chung will survey current hospice users on their original choice of care setting and barriers to access their choice.