Ethnic minorities want quality end-of-life care, including in-depth conversations with their physicians about how to achieve this, but they often face barriers to getting the care they desire. That's according to a study published today in the Journal of Palliative Care.
In a press release I wrote about the study, lead author VJ Periyakoil, MD, a Stanford expert in end-of-life care, explained why she decided it was important to conduct a study with the goal of reaching out to traditionally hard-to-reach ethnic groups within the communities where they live:
There is so much generalization and stereotyping by physicians about how ethnic minorities want everything done, irrespective of how effective these treatments might be at the end of life. I decided that we needed to go into their communities and ask them what they want.
Periyakoil and her colleagues conducted a series of in-person interviews at a scattering of community-based senior centers around the San Francisco Bay Area accompanied by interpreters. The populations are particularly hard to reach because of a number of issues, including language barriers, immigration status, and poverty levels, Periyakoil said. In addition to English, interviews were conducted in Spanish and five Asian languages -- Burmese, Hindi, Mandarin, Tagalog and Vietnamese. As I described in the release:
The researchers... found that all participants valued high-quality end-of-life care. A majority, 61 percent, said there were barriers to receiving high-quality care for members of their ethnic group.
The 191 participants who reported barriers to getting quality end-of-life care were asked to describe the biggest barriers, which were, in order of how often they were cited: finances and health insurance; physician behavior; communication problems with doctors; family beliefs; health system barriers; and cultural/religious barriers.
Additional reported barriers included an inability to understand medical terminology, language barriers and family members with differing beliefs about death and dying. This conflict with family members is a common issue across all ethnic and socioeconomic groups, Periyakoil said, and one that most people could potentially face at the end of life. It's one that she also chose to expand on in an accompanying New York Times editorial published today.
More from our release:
"Most people don't know that at some point most of us will lose our ability to make health-care decisions at the end of life. When this happens, a family member is usually required to step in as a proxy decision-maker."
"Making medical decisions for a loved one takes mental fortitude and a deep understanding of the patient's values and preferences for care," Periyakoil said. "It's a profound responsibility choosing whether a person dies at home or in a hospital, what types of treatments to attempt or forego, and when to limit or withdraw burdensome interventions and allow a natural death. I've seen far too many families split apart due to the trauma of this decision making. In fact, the only right decision is what the patient wants."
Previously: Stanford physician highlights the never ending battle of PTSD, How would you like to die? Tell your doctor in a letter, Stanford doctor on a mission to empower patients to talk about end-of-life issues and Medicare to pay for end-of-life conversations with patients
Photo of VJ Periyakoil by Norbert von der Groeben