BY DANIEL GAITAN | daniel@lifemattersmedia.org

Too many impediments prevent minority patients from receiving the high-quality end of life care they say they desire, according to a new study published in the Journal of Palliative Medicine.

In one of the few studies of its kind, Stanford University School of Medicine researchers found that ethnic minorities hope for conversations with their physicians about quality end of life care. Ethnicity does not predict the type of end of life care people prefer.

However, numerous barriers- including poor communication and finances- prevent quality care delivery. These barriers come at a cost.

According to the study, “the need to ensure culturally competent, high-quality end of life care for diverse Americans is not only a national priority but also perhaps the largest public health crisis looming over our nation.”

Researchers interviewed 315 Americans of multiethnic backgrounds — 117 white, 38 African-American and 160 Asian American — over the age of 50 from five cities across California’s Bay Area.

“We wanted to hear directly from minorities, because they never have a say,” lead author, VJ Periyakoil, a Stanford palliative care physician, told Life Matters Media. “They’re talked about, but they’re never asked. They were very happy that someone would come and ask about them.”

With the help of interpreters, interviews were conducted in English, Spanish and five Asian languages. Participants were asked the open-ended questions: 1) is receiving high-quality end of life care important to you?; and 2) what are the top three barriers you and those from your culture, race, and ethnicity face in receiving high-quality end of life health care?

All participants said that they valued quality end of life care.

Despite their vast cultural differences, participants’ responses reflect common themes.

“In clinical practice, there are some issues that transcend race and ethnicity,” Periyakoil said.

Many physicians and researchers incorrectly assume that minority patients are “anti-hospice” and will opt for aggressive cancer treatments with little chance of cure, she said.

“These results challenge the conventional wisdom that ethnic minority populations don’t want good end of life care,” said Dr. Charles F. von Gunten, editor-in-chief of the Journal.

Barriers To Quality End Of Life Care Revealed

More than 60 percent of participants said that barriers prevented members of their ethnic group from receiving high-quality, individualized end of life care. The roughly 200 participants who reported barriers frequently cited finances and lack of health insurance as the most significant impediments.

Health care inequalities occurring across ethnic and socioeconomic groups persist into end of life care. Seriously ill minorities are disproportionately impacted by poor-quality care.

“In reality, it is more of a socioeconomic issue,” Periyakoil said.

Physician behavior emerged as another commonly cited theme; many reported that doctors are too busy to initiate end of life conversations and seem reluctant to listen to concerns and questions. A related issue, a communication chasm between doctors and patients, was cited as the third largest barrier. The health literacy of patients and language differences were reported to cause this gap.

Health system barriers illuminate the perplexing challenges many minority patients face when receiving care. The culture of health care is described as “biased” towards high-intensity treatments even if they are ineffective. According to the study, patients “were subjected to tests and treatments at a very rapid pace, and that they did not understand what these interventions were intended for. They reported that the hospital staff often felt pressured to try to prolong life even in the fave of obvious terminal illness.”

A Growing Problem

Periyakoil said she believes access to end of life care will become a larger issue as the baby boomer population faces serious illness. As current minority groups are projected to make up the majority of the U.S. population in the next three decades, there is work to be done to provide culturally competent end of life care. Physicians and allied health professionals require training in culturally effective end of life dialogue early on in the course of chronic or serious illnesses.

“Issues relating to caring for ethnic patients and their families will come to the forefront,” Periaykoil said.

– Image courtesy WikiMedia Commons