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Addressing Health Disparities in End-of-Life Care Among Minority Populations in New Jersey

Goals of Care Coalition of New Jersey (GOCCNJ) has launched a new educational program to improve end-of-life care among minority patient populations in New Jersey. This initiative will address the significant disparities in access to advance care planning services and palliative care among these patient groups.

In general, patients nearing the end of life in New Jersey are treated with more intense medical care than those in any other state in the United States. Often, this care may be burdensome and contrary to the values and goals of patients and their loved ones. At the same time, many patients nearing the end of life may not have access to palliative services and high quality patient-and-family-centered end-of-life care.

These discrepancies and inconsistencies in end-of-life care are even greater for black, Hispanic, and Asian populations, who are generally less likely to participate in advance care planning than white patients. New Jersey has the most ethnically diverse health care provider population and the third most diverse patient population of any state in the United States. These cultural differences can lead to a lack of awareness and to misunderstandings between patients and health care providers, which can limit advance care planning conversations.

"The causes for this are complicated. Health care providers may not always be aware of the communication style or preferences of patients from different ethnic and cultural backgrounds, which can unintentionally create obstacles to advance care planning," says David Barile, MD, medical director of GOCCNJ. He adds, "End-of-life care decisions are difficult for many families, but for patients in the African-American, Hispanic, and Asian communities, there are additional challenges such as lack of access to information, language barriers, and cultural differences that can negatively impact the care these patients receive at the end of life. As a result, too many of New Jersey's minority patients suffer, experiencing unnecessary or unwanted hospitalizations at the end of life."

To help address these issues, GOCCNJ received a grant from the Robert Wood Johnson Foundation to educate health care professionals and patients in New Jersey communities with predominantly black, Hispanic, and Asian populations in Essex, Union, Hudson, Passaic, Middlesex, and Somerset counties. In each county, the program will include an event to educate health care professionals in the largest hospital system. GOCCNJ will also host events in the largest skilled nursing facilities and assisted living communities in each county to educate their staff and residents about the benefits of advance care planning and to guide them in how to have these conversations. Patient education materials (including GOCCNJ's Discuss, Decide, Document Advance Care Planning Guidebook and 4Step iCare Plan) will be made available in multiple languages and distributed at these events. These materials and a detailed schedule of events can be downloaded from GOCCNJ's website,

"Without an advance care plan, health care providers in New Jersey are required to do everything possible in an attempt to save your life. This aggressive medical care is often unwanted and may be difficult for patients and families. While 90% of people say that talking with their loved ones about end-of-life care is important, only 27% have actually done so," says Lori Feldstein, CEO and executive director of GOCCNJ.

She adds, "A focused effort to educate minority patients and the doctors who treat them will support and promote culturally sensitive conversations about advance care planning and documentation of patients wishes, and will make it possible to improve the status quo regarding end-of-life care among New Jersey's minority patients."

— Source: Goals of Care Coalition of New Jersey