The researchers interviewed 315 people over 50 at senior centers in Fremont, Palo Alto, San Francisco, San Jose and Walnut Creek. The group included 38 African-Americans, 160 Asian-Americans and 117 Caucasians.
Interviews were conducted in multiple languages: English, Burmese, Hindi, Mandarin, Tagalog and Vietnamese. Researchers examined participants’ attitudes toward end-of-life care and whether they had experienced barriers to getting quality end-of-life care for relatives or others in their community.
Finances an Issue for Many
Researchers are still collecting data on Latino participants and plan to publish a separate study on their views, Periyakoil said.
While all of the participants in the study said they valued high-quality end-of-life care, about 60 percent said they had experienced barriers to getting it, most notably financial difficulties and a lack of adequate health insurance. Medicare typically covers only short-term nursing home care and offers hospice benefits to patients whose doctors certify they have six months or less to live and who are willing to forgo treatment intended to cure their terminal illness.
There were no statistically significant differences among ethnic groups in reporting barriers to care. But participants with less education were more likely to report that their biggest barrier to care was financial.
Patients with more education were more likely to cite doctor behaviors that hampered end-of-life communication. And women were more likely than men to cite barriers to care overall, perhaps because they were more likely to be direct caregivers and have more experience with end-of-life needs.
'Vague Responses' from Doctors
Regardless of ethnicity, patients felt that “doctors were just too busy to initiate [end-of-life] conversations, reluctant to listen to their concerns and questions about EOL decision making, and often gave vague responses, making it difficult for the patient to comprehend their choices and make informed decisions,” the researchers wrote.
An estimated 2.6 million Americans die every year, but how the American health care system handles their last days is problematic across ethnic groups, according to “Dying in America,” a landmark report released in 2014 by the Institute of Medicine. Too many people end up having aggressive treatment that is ineffective and expensive and doesn’t contribute to the patient’s quality of life, the report found. Other research examining racial gaps in attitudes toward hospice care and other studies has found differences among ethnic and religious groups in how they approach end-of-life decisions.
But people want to talk about it regardless of background, says Dr. Steven Pantilat, director of UC San Francisco's palliative care program. He was not involved in the study.
“What this study tells us is that all of our patients want us to have these conversations,” Pantilat said. “They’re waiting for their doctors to bring it up, to not be rushed, to communicate sensitively.”
A new federal policy may make those conversations easier –- and more routine. Starting in January, Medicare will reimburse physicians for discussing end-of-life care. That policy infamously -- and incorrectly -- was derided as promoting “death panels” during the debate over the Affordable Care Act, and a version of it was dropped from the legislation. The counseling will cover what kind of medical care patients want to receive as they approach their last days.
Periyakoil urges patients of all backgrounds to prepare for these conversations, and new planning tools are available in different languages to help. Among them is the Stanford Letter Project, which helps patients write a letter to their doctors about the end-of-life care they do and don’t want in languages including English, Spanish, Mandarin, Vietnamese, Hindi, Urdu, Tagalog and Russian.
In one redacted letter provided by Periyakoil, a woman named Patricia writes: “I do not want my longevity to be more important than my comfort.”
Pantilat advises the doctors he trains that they don’t need deep knowledge of the beliefs of every religion and culture they might encounter, because every patient, of whatever ethnicity, has different goals.